Patient Comments: Polymyalgia Rheumatica - Symptoms

Question:

The symptoms of polymyalgia rheumatica can vary greatly from patient to patient. What were your symptoms at the onset of your disease? Submit Your Comment

Comment from: Bren in NC, 65-74 Female (Patient) Published: July 02

I started having such pains in my chest (mostly when lying down) that my doctor and I were sure it was heart related. After many trips to the cardiologist and every test imaginable, he assured me it wasn't heart, though he told me I had swelling around my heart. My own online research found polymyalgia rheumatica (PMR), took one 5 mg prednisone and was able to lie down to sleep for the first time in 3 months. One year later, I developed rheumatoid arthritis (RA). I cannot handle the RA medicines. Now, 2 years after PMR diagnosis, I'm experiencing a flare up… terrible!

Comment from: Mary, 75 or over Female (Patient) Published: May 17

My polymyalgia rheumatica symptoms were sudden intense weakness in my body and legs, and aching all over. I felt ill.

Comment from: Survived it, 55-64 Female (Patient) Published: May 08

Having lost my spleen as a teen, I'd been told to get a flu shot annually. This I did until November of 2017 (at age 56) when I had really bad reaction to flu shot. Within three days, I couldn't bend my knees without pain in my knees, hamstrings, etc. I had wrist pain, shoulder pain and muscle weakness throughout my body, along with exhaustion. After two weeks, I was diagnosed with polymyalgia rheumatica and put on 20 mg of steroids. This helped and I felt 80 percent better. I got off prednisone after 5 months, but was still in pain.

Comment from: Margey, 65-74 Female (Patient) Published: May 06

Major polymyalgia rheumatica (PMR) problems started with weak and painful wrists, swollen fingers, and inability to raise arms. It rapidly progressed to weakness in thighs and knees, and muscles hurt to touch. My dog licking my hand was painful. After a coach trip, I was unable to get off. It progressed fast to being unable to dress or undress or wash properly. Then I had deep depression. Initially I was diagnosed with fibromyalgia and had MRI scan to eliminate skeletal problems. Blood tests identified PMR. I started with 25 mg steroid for 5 weeks, then 15, and now 10 mg.

Comment from: Wino, 65-74 Male (Patient) Published: April 30

My symptoms of polymyalgia rheumatica were severe pain and weakness in hips, thighs, and back of knee, and severe pain in both shoulders. Walking, sitting down and standing up were all severely limited with pain.

Comment from: Jane, 65-74 Female (Patient) Published: July 09

I have been suffering from polymyalgia rheumatica for over 2 years and have managed to reduce prednisone down to 2 mg per day. I feel it will never go away and I am depressed about it. Of course it is coupled with osteoarthritis in the knees.

Comment from: Britt4356, 55-64 Male (Patient) Published: July 02

I've had random throat pain on each side, never the same one at once. I also feel like someone is squeezing my neck at all time, not hard but it is there. I went to the ENT he put me on medication because I also had throat burn. I'm 28 and my anxiety is really bad now, worried about cancer.

Comment from: Ramps , 65-74 Female (Patient) Published: April 30

My symptoms of polymyalgia rheumatica were so bad I could not get dressed. I was on prednisone, then went off it, and my polymyalgia rheumatica came back, so now I am on 3 milligrams prednisone. Thanks to everyone for sharing on here I'm looking for alternatives to prednisone also.

Comment from: Tia63, 55-64 Female (Patient) Published: April 17

I have had polymyalgia rheumatica (PMR) for a little over a year now. I have been to every specialist available. This was their final diagnosis. I was put on prednisone 20 mg a day but I became so puffy and couldn't seem to control my eating habits. So I called the doctor and I am now off it. I presently take Celebrex and Cymbalta and it helps to the point that I can do what needs to be done in my house and work. I struggle with it 2 to 3 days every week but I'm learning to tolerate the stiffness and achiness.

Comment from: May, 65-74 Female (Patient) Published: January 14

I have just been diagnosed with polymyalgia rheumatica and am battling. I am currently on 25 mg prednisone and it has improved slightly. The mornings are the worse with weakness in the legs and feeling stiff and sore. I feel unwell in the mornings and it takes a while to get moving. I started to lose weight but the prednisone is putting it back on. I was an active 69 year old up to 4 weeks ago it just hit me one morning - well one day, a cripple the next. Hope it clears up quickly as it affects our way of life.

SLIDESHOW

What Does It Mean When Your Whole Body Aches? See Slideshow
Comment from: Annie, 65-74 Female (Patient) Published: November 26

Over a few days, I developed early morning pain in the neck and shoulders which progressed to significant pain in hips, back and knees. My general physician quickly identified the problem as polymyalgia rheumatica and blood tests showed a C-reactive protein (CRP) of 30 and ESR of 55. I was prescribed 15 mg prednisolone and all symptoms resolved within a few days. I am now on 8 mg prednisolone with no pain. I'm happy to accept possible steroid side effects if it means I can be pain free and active with good quality of life.

Comment from: Outdoor girl, 75 or over Female (Patient) Published: November 06

I was diagnosed with polymyalgia rheumatica 8 month ago. My ESR and CRP were low and the rheumatoid factor was negative. I have been treating the stiffness and aches with Motrin. I wonder how long I can expect the condition to last. I am avoiding using steroids but sometimes I really wish I had the relief. I have seen that it usually lasts about 1 to 2 years.

Comment from: SusieQ, 45-54 Female (Patient) Published: October 02

Following an inflamed knee joint, with effusion to the bone marrow and muscles in my lower leg, as well as a shoulder injury, I received a cortisone shot in my shoulder. Four days later, I woke up with severe pain in both shoulders, lower back, hips and both knees. In the weeks that followed, and no diagnosis, pain in my wrist and arm muscles began as well as stomach pain. Those were the first symptoms of polymyalgia rheumatica.

Comment from: Carol, 65-74 Female (Patient) Published: September 19

The polymyalgia rheumatica (PR) came on slowly - I was having sinus and lung issues. I was very active with golf, walking daily, etc. It became painful to get out of bed or walk. It was on advice of a friend I went to the emergency room and got referred to an internist at the hospital who diagnosed PR and started me on 25 mg of prednisone. Within the first week I saw improvement and within a couple of weeks I was back to normal activities. I am now on 1 mg 3 years later.

Comment from: Landman, 65-74 Male (Patient) Published: June 12

I was in a golf outing. I hadn't played golf in a couple of years, so I knew I would be sore the next day. The next morning I was very sore in my hips, legs, and shoulder joints, but it never went away. After 30 days I was diagnosed with polymyalgia rheumatica and I still believe that golf was the trigger. It has got so bad, especially in the morning when I get up. I can hardly raise my arms. Very painful.

Comment from: Susan, 75 or over Female (Patient) Published: June 05

My symptoms of polymyalgia rheumatica were extreme weight loss: 143 lb. to 97 lb. in 28 days, and loss of appetite. Pain began in shoulders, increasing to hip joints. It is 3 years and now I have severe pain in muscles of upper arms and upper thighs. I became unable to stand about a year ago, due to pain becoming severe. Joint tissue has completely gone but, here is the thing, I am now 80, on the older side of this illness. And the second thing is I am not able to take prednisone as it caused severe bleeding high up in my lower intestine. As I read the literature this will run its own course and I should be able to stand and begin walking again in 3 and 1/2 years; October. I have advised my children that I will be taking the Glacier NP bus to top and hiking down and I would love for them to be with me if they can! Best wishes to all of you out there!

Comment from: Lilly, 65-74 Female (Patient) Published: May 15

I had pain and stiffness in the hips, thighs, and down the back of my legs. Also very stiff neck. I was started on prednisone, did very well until we tapered that. Symptoms of polymyalgia rheumatica returned to both hips and thighs, I also have severe muscle pain the legs. Neck pain did resolve. Shoulder pain has started.

Comment from: Connie, 65-74 Female (Patient) Published: April 27

I have had rheumatoid arthritis (RA) and osteoarthritis for the past 15 years. I am being treated by a biologic and prednisone 5 mg daily. About 2 months ago, I woke up with strange pain in my calf muscles of both legs. It also affected my knees and after 1 month I went to my RA doctor and got a shot into the left knee which was the worst. Meanwhile, the joint pain was helped but my calf muscles began to harden and swell and get hot to the touch. I finally couldn't even walk. I tried all the things I knew from my RA pain - hot/cold packs, hot showers, and I finally bought support stocking thinking it would help with the terrible pain in my calves. My RA doctor thought my Baker's cysts were leaking, but ultrasound said no. My primary physician sent me for further ultrasound and color Doppler to look for blood clots, none showed, yet my legs were getting worse and worse. I finally had to sit in a wheel chair. I couldn't put any pressure on my feet. Then my feet began to swell and within 2 days my ankles were the size of my calf muscles. My primary doctor sent a prescription for a Dose Pack and Lasix and within 2 days my legs were like new. I finished the Dose Pack, lost 6 lb. of water weight in 4 days. Then, the day after my last Dose Pack pill, my left calf began to hurt, by evening that same day, my right calf began to hurt. They burned like a sunburn and I was unable to lay them on anything but something very soft. I took 10 mg of prednisone the following day, but had no good results. Finally at 3:00 am I awoke from the pain and took 20 mg of prednisone and by 9:00 am, my legs were normal again. I called both my doctors with the new symptoms and that's when my primary doctor told me it sounded like polymyalgia rheumatica. The reason was because I had such dramatic results at higher doses of prednisone. I came to this site and read the description and it was spot on! It happened just like it says. My recent blood work did show an increase in my liver enzymes and my CRP and sedimentation rates were elevated, so it seems to fit the description like a textbook. I will see my RA doctor in 5 days to review what has happened and decide the next steps. But I was almost relieved to read that there was a name for what happened to my calves and the terrible pain.

SLIDESHOW

Pain Management: Surprising Causes of Pain See Slideshow
Comment from: Peter H, 55-64 Male (Patient) Published: April 03

I am a 56 year old male in very good health. My daughter is a personal trainer and runs group sessions from our home. I attend on average about 4 sessions a week and consider myself very fit for my age. In February 2018 I purchased a new, very good, cyclocross bike and began riding with my wife to work (she's been doing it for years); about 6 km each way. Over the first two weeks, I started getting pain in my right knee and right hip flexor area. Finally I went to a physiotherapist and he diagnosed IT (iliotibial) band stiffness and recommended icing the knee and rolling the IT band (thigh area). Over the next few days I started getting pain in other knee and hip. I went back to the physiotherapist who was not able to treat effectively as the pain was significant. He suggested I go to a doctor and get a scan of the knee. I was thinking that due to my limping I was causing pain in other areas. At this time I was also starting to develop pain in my shoulders. Anyway, the doctor suggested x-rays (knee and hip) first which showed nothing! I went back a few days later and referred for MRI of knee. Before I went back to the doctor, I visited a different physiotherapist and described increasing symptoms (including flu-like aches generally). She suggested polymyalgia rheumatica as possible diagnosis. I saw the doctor on the same day and he agreed that this may be possible. I was referred for blood tests which showed elevated levels of CRP (91 - ref range 0-5) and ESR (69 - ref range 1-20). Diagnosis of polymyalgia rheumatica was confirmed. I started on 25 mg corticosteroid once a day for five days, then reduced to half (12.5 mg) from day six. Also initially I was taking Panadeine Forte then changed to 1 oxycodone twice a day but pain relief didn't occur. My symptoms increased in knees, shoulders and hips. The doctor put me back on Panadeine Forte as well as oxycodone, however no real improvement yet (although one day was fairly good). My pain levels are up around the 8 to 9 level most mornings and slowly subside during the day to about 5 to 6 in late afternoon evening. I am going to see the rheumatologist next week. I must admit that reading other posts on this site I am not as certain of a quick resolution as I initially thought.

Comment from: ArthurS, 55-64 Male (Patient) Published: February 20

After inhaling a toxic vapor, I started to feel light headed, and had pains in my neck and upper arms. It was a number of weeks of suffering, feeling sore each morning, and unable to at times get out of bed without rolling out. I had headaches and shoulder pains similar to that of being in a serious motor vehicle accident. Days went by and along with the already felt symptoms my legs became sore in the muscles, I had pains in my knees, and was finding it difficult to walk in the end. One morning, I was unable to move any part of my body without extreme pain and discomfort, and my wife called the paramedics, who had to administer 20 mg morphine before I could be moved to a waiting ambulance. This was near two years ago. After diagnosis of polymyalgia rheumatica (PMR), prednisone was given at 60 mg per day. This lasted for some considerable time before reducing it down to 25 mg but the PMR flared up with vengeance, putting me in bed for three days unable to move without severe pain in neck, arms, shoulders, upper legs and even feet. Toes, legs, shoulders and arms all have stabbing pains in them, even till today, and some time ago my back seemed like it was breaking. Arms and shoulders feel like they are being twisted up my back, and now I am turning to Targin and Endep for pain and muscle spasm relief, which is a help but not a total success. Prednisone is said to be the only medication that we sufferers can take for PMR and it does come with pages of side effects. I have had to have a three hour operation to remove an abscess in my upper jaw, I have had x-rays and MRI like you would not believe, I am now finding that the prednisone, which does damage cartilage, has damaged my thyroid cartilage, allowing my larynx to wander sideways, and that has its own complications. So my fellow sufferers, I hope that you are all on the way to recovery or rather have you PMR put under control without experiencing my side effects of PMR and prednisone.

Comment from: Rick, 45-54 Male (Patient) Published: February 09

I was just diagnosed with polymyalgia rheumatica, and am now taking 5 mg prednisone tablets twice daily. My symptoms began in my right hip area, and then spread to the upper thigh area of both legs. Within two weeks, I had intense pain and stiffness in both thighs, both shoulders, and down my left arm to the wrist area. Lying down in bed was a hard chore, as well as turning over after I had lain down. Putting on my socks, pulling up my pants, putting on or taking off a shirt or jacket, all became torture sessions. I have had several surgeries, several broken bones, and this pain is as severe as any that I have experienced in the past. I felt relief from the initial dosage of prednisone within 24 hours, and the pain is manageable at this point.

Comment from: Gary, 55-64 Male (Patient) Published: January 12

I started with polymyalgia rheumatica in January 2017. I was first diagnosed having frozen shoulder and my primary physician sent me to a rheumatologist who gave me a shot in each shoulder which only worked for a couple of days, and sent me to physical therapy for four weeks. As some of you know all that did was give me more pain. After going back to the rheumatologist the diagnosis was changed to polymyalgia rheumatica and I was put on 15 mg prednisone a day. Within two days I could lift my arms above my head and the shoulder pain was gone and the pain behind my thighs was gone, but I still had some pain in my upper arm muscles. I'm being weaned from the prednisone (1 mg per day) and will be done around the middle of January 2018. My worst side effect has been that the prednisone has really messed with my sugar levels. I wasn't a diabetic before but I am now.

Comment from: DJ aussie, 65-74 Male (Patient) Published: December 12

I have been diagnosed with polymyalgia rheumatica (PMR) two years ago, Christmas time 2015. My areas of concern are the lower body, from waist down my buttocks and the back of my legs, plus feeling ill, chills and massive depression. I started with 25 mg prednisone. Total recovery in 48 hours, but of course it was too good to be true. I have been dropping doses of prednisone till I have a crash week in bed, up the doses and away I go again. I got down to 7 mg and had a crash 2 weeks ago, back to 10 mg and moving again, but bit depressed. I am a landscaper plus I do resistance training. I love my garden and job, but sometimes life is awful. Thanks for listening. Suppose I am lucky compared to some. Cheers.

Comment from: Na ee, 55-64 Female (Patient) Published: November 28

The pain started in May of this year. I thought I had overdone it outside, cleaning and painting. I woke up and could not move my arms or rollover to shut off my alarm. The pain was intense. When I got up my hips and legs were also affected, almost like being frozen. Afterwards I Inched my way down the steps and lifted my legs into hot shower, and that helped. I could raise my arms a bit. I went to see my chiropractor but the adjustment was temporary. After a month I went in and was diagnosed with polymyalgia rheumatica. This pain is debilitating. The prednisone has so many side effects and I also think I'm allergic to it. But I can't function without it. I have gotten it down to a minimal 7.5 mm a day. And supplemented with natural pain relievers and turmeric tea. I have had fibromyalgia for 20 years. This pain is 20 times worse.

Comment from: Djp, 55-64 Female (Patient) Published: August 30

I had polymyalgia rheumatica (PMR) for 15 to 24 months. It started after having my 2nd total hip replacement on my left side with severe pain in my shoulders and severe flu like symptoms. It felt like my shoulders were broken. I was on prednisone for over a year and the PMR finally went away. Every so often I feel the flu like symptoms and it scares the heck out of me. I have had 28 operations from birth and this was the worst pain I had to endure for such a long period of time.

Comment from: May, 75 or over Female (Patient) Published: March 07

I had almost constant pain in my lower back with pain running down the back of my legs almost to my knees, across my shoulders, and in my neck and lower part of head. After a couple months I became so weak I had to use a wheel chair to get to the doctor's office. Medication of 60 mg of prednisone worked for my polymyalgia rheumatica at first but after it was reduced to 20 mg it didn't work too well so I was put on methotrexate, six 2.5 mg also. It has made me feel much better.

Comment from: PHJ, 55-64 Female (Patient) Published: June 23

It's been a long 2 months. I was working in the yard on a Sunday in April 2016 and was unable to get out of bed the following Wednesday. I was first worked up for Lyme and other tick borne diseases. All negative. I finally googled my symptoms and polymyalgia rheumatica popped up. I took this information to my primary care physician who ended up sending me to a rheumatologist. A dose of 60 mg of prednisone works some days better than others. They are talking about putting me on methotrexate. I don't like either one but I can't continue to live with this pain. Shoulders and hips have lost all range of motion and arms are barely functional. I had temporal artery biopsy which was normal but I had been on prednisone for weeks prior. I have been instructed to keep 80 mg of prednisone with me at all times and take if there are any changes in vision. I'm scared.

Comment from: az_xplorer, 65-74 Male (Patient) Published: May 05

I had a really bad polymyalgia rheumatica (PMR) experience 6 years ago in May. It took a year of declining dose of prednisone to resolve it. As an aside, I have subsequently had a cataract in each eye. But they weren't a bad thing because the procedure is quick and painless and my vision is much improved with the new lenses. Last year, also in May I had an episode of shoulder pain that came and went in a week, without treatment. It felt like PMR. Now this year, in April, I had an onset of terrible fatigue and soreness all over. It lasted several days and then vanished. Except I am left with considerable weakness and soreness in all my glute muscles, especially in the morning. It makes it hard to walk any distance and the elliptical in the gym kills me. That's the only muscle group affected, otherwise I feel great. I wonder if this is a PMR recurrence.

Comment from: rbellew12, 35-44 Female (Patient) Published: February 03

I was just diagnosed with polymyalgia rheumatica. I have pain all over, stiffness, stomach issues, and horrible fatigue. I'm just worried this is an incorrect diagnosis. I'm 38! And I've had these issues for decades. They flared up in 2011 and have gotten worse since and I just got a diagnosis after being told it was fibromyalgia for years. I've gained weight not lost it. I get swelling and water retention is very bad at times too.

Comment from: cindy s, 55-64 Female (Patient) Published: January 26

I was diagnosed with polymyalgia rheumatica about 6 or more years ago. My condition was found though examination and a white blood cell count below normal range. Leukemia was ruled out. I had pain in my shoulders, and hips and without medication could barely move. My primary care physician put me on Cymbalta 120 mg daily and told me not to stop taking it. I was overweight at the time and also fighting osteoarthritis. The Cymbalta keeps it in check, however, I do have cramping in my feet sometimes.

Comment from: Barbara, 55-64 Female (Patient) Published: December 30

My polymyalgia rheumatica symptom was stiff left middle finger, and the stiffness traveled up to shoulder and side of neck. Could not raise left arm or sleep on side or back.

Comment from: Rosebuddy, 65-74 Female (Patient) Published: October 21

I was diagnosed with polymyalgia rheumatica (PMR) 13 months ago following an upper respiratory infection that I picked up from the nursing home where I worked. The pain started in my hips and then I developed a severe headache. I coughed for six weeks and ended up in the emergency room with severe pain in head and hips. No GCA (giant cell arteritis) but I was diagnosed with PMR and branch retinal vein occlusion. I was started on prednisone. At ten month point I got down to 1.5 mg prednisone and the PMR came back with a vengeance. Now I am starting all over again trying to control pain and then will begin the slow trek of titrating the prednisone down. I've noticed that quite a few people were exposed to virus working in healthcare setting before onset. I wonder if there is any connection.

Comment from: JJBLUiisN39, 75 or over Female (Patient) Published: July 28

I was recently diagnosed with polymyalgia rheumatica (PMR), and this past Friday had a temporal artery biopsy as my eye doctor saw some things that didn't look good to him and one of his colleagues. I should have the results by tomorrow, I am currently on 70 mg of prednisone a day and it has finally taken control of the pain. I believe I have had this autoimmune disease for quite some time but it was so severe at diagnosis that lab tests were finally done which confirmed it. A new symptom has entered the picture and that is my feet stiffening and seemingly 'seizing' to the point where it is extremely painful. I am a retired massage therapist and volunteer at my local hospital, doing aromatherapy massage for our patients. Naturally, I am not currently allowed near the hospital so I am extremely bored now that I have the pain under control. Wishing all of my fellow-sufferers pain relief and a miracle cure!

Comment from: farmer-rd, 65-74 Female (Patient) Published: July 06

I was diagnosed in June 2015 with polymyalgia rheumatica (PMR). I am on prednisone and it is helping. Some days are better than others. My pain started in my shoulders and in my hips, they were the worst. I also had a lot of pain in my hands. Also my head hurt at various places at different times.

Comment from: Richard, 65-74 Male (Patient) Published: June 16

Unlike many others, I did not suffer any muscle pain with polymyalgia rheumatica (PMR), only extreme tiredness and exhaustion and loss of appetite, resulting in losing 10 kg in a couple of weeks. After several blood tests I was diagnosed with PMR and prescribed prednisone. The original dose was two 25 mg tablets per day. Within hours of the first dose I felt better, my appetite recovered and I was back to virtually normal sleep patterns. I am now on a gradual reduction of the prednisone and life is getting back to normal. It's remarkable for the instant onset and even more rapid response to medication.

Comment from: Bunny, 65-74 Female (Patient) Published: May 13

I was diagnosed with polymyalgia rheumatica (PMR) about 8 months ago. Within 2 days my hips were aching and I couldn`t stand in one place except for a couple of minutes and my hips would lock up and I had trouble lifting my leg to start walking. I also went out to my daughter's motor home and I could not lift my legs to step up and once I did get up on the steps I could not get back down without help. I ache from my neck to below my knees mostly. At first I thought it was my fibromyalgia but it had never presented with these symptoms. I went to my doctor and she said right away that I had PMR and explained it to me. I was 70 then. I did all the lab tests and nothing showed up so she sent me to a neurologist and he did the physical exam and said that was what I had. At that time he said the lab tests do not always show up with the way to diagnose this. He repeated the lab tests again and the same results. So I was put on prednisone 20 mg. Pain was pretty much manageable but the side effects were bad so I received a decreased dose of 2 mg. Same thing; side effects of severe agitation and abdominal pain continued. I said stop the prednisone. Doctor said the pain will be continual and hard to deal with. So I have Ultram 50 mg BID. I take 1 sometimes at night but rarely. So here I am and I was a volunteer firefighter for several years and a nurse for 20 years and retired in 2008. Again I was very active, worked in the yard until the day this hit. I have trouble getting dressed and getting up. My body decided I would be awake at night and sleep during the day. I probably am rambling as I also have that fibro fog thing. Thanks for listening.

Comment from: Cookie, 65-74 Female (Patient) Published: March 31

I was diagnosed with polymyalgia rheumatica (PMR) in June 2014. Symptoms began with pains in lower portion of my legs and gradually the pain crept up to my thighs. I felt like I had run a marathon or like someone beat my legs with a baseball bat. I started to feel pain in my left jaw and during the night, drenching sweats. I thought I had the flu. I went to the Walk-in-Medical and had blood work (Friday). On Tuesday, I received a call from doctor to go directly to the emergency room. My SED rate and CRP rates were highly elevated. I also began running a fever. At first, it was thought I might have temporal arteritis; however after 20 mg of Medrol, my symptoms disappeared (a day later). I have been trying to wean off the steroids but it has been a very slow process. I am currently on 6 mg/day. Reducing by 1/2 mg every 3 weeks seems to be the way to go as, if I try reducing too much too quickly, symptoms start recurring. I hope I can get off the steroids by summertime as I am very upset looking at the huge bags under my eyes, the moon face, weight gain, etc. caused by the steroid usage.

Comment from: Clay, 65-74 Male (Patient) Published: December 04

My polymyalgia rheumatica (PMR) started with a chill followed by body pain, total loss of appetite, and dehydration. I was in bed for a week, followed by a little over a week in the hospital to be seen by many specialists and a biopsy of an artery of the neck. All tests and consultations were inconclusive except that C - reactive protein count (a marker of inflammation) was elevated a thousandfold. Well, after discharge a rheumatologist thought I met the criteria of PMR. She told me the pain might be self-limited and might resolve in a year or year and a half. She started me on 15 mg of prednisone to be given in descending doses. It's been a little over a year and I'm down to 4 mg of prednisone a day. I'm a little discouraged as I still have pain and the fact that she told me recently that the pain might not resolve. Inflammation is now only 4 times normal.

Comment from: Nen, 65-74 Female (Patient) Published: November 04

My awakening to polymyalgia rheumatica was traumatic, waking one morning and having horrendous pain and stiffness in both my arms, I couldn't get out of bed. The pain got better during the day but next morning the pain was back. Then it gradually spread to my neck, buttocks, thighs, and down the back of my legs to my heels. My bladder and bowels were affected too, I couldn't get to toilet in time and with painful stiff arms, I couldn't get my knickers down in time. Nights are the worst with stiffness, and sleepless nights with arm pain. I have a weight loss of 6 kg at this time. I couldn't drive the car as I couldn't turn my neck. I found that physiotherapy helped a lot and my wheat bag was never far away and gave me great warmth. I went to a naturopath and her suggestions were of great help. No sugar or wheat, salt, tomatoes; well, all the acid fruits. Over the 7 months things have got better, so that's good.

Comment from: Mike, 75 or over Male (Patient) Published: September 16

Two plus months ago I awoke with severe pain in my left shoulder, elbow and hands that were swollen and numb. Living near a major medical university I was referred by my general physician (GP) to a hand specialist. To make a long story short, I saw seven different specialists, had two ultrasounds and a test where you are shocked to determine nerve damage. Finally I was referred by a neurologist (who confirmed an earlier diagnosis of carpal tunnel) to a rheumatologist. She suspects polymyalgia rheumatica (PMR) as I was beginning to develop similar symptoms to my right side. My sedimentation rate and calcium tests however came back normal. I started on prednisone this morning so do not have anything to report as my symptoms are the same as when I first noticed them with the exception that elbow and shoulder pain has moderated to tolerable levels. I wonder what my problem is if PMR is not the culprit. Pseudo gout and gout have been ruled out as MT uric acid is normal.

Comment from: Lin, 55-64 Female (Patient) Published: June 19

I started to notice a weakness in my arms and then pain in my jaw muscles. When I went to my doctor she suspected right away that it might be polymyalgia rheumatica (PMR) and ran the appropriate blood tests that confirmed the diagnosis. I was sent to a rheumatologist and she started me on 60 mg of steroids. Relief was very quick and I am weaning off the steroids now. I am having spasms in my legs in the evenings. I am 63 and play tennis a few times a week.

Comment from: oldsprinter, 55-64 Male (Patient) Published: April 14

My polymyalgia rheumatica (PMR) started in the spring of 2008 with a stiffening neck and then every 2 to 3 weeks it would seem to include another set of muscles. By November I could hardly get out of bed and could not get dressed as it hit my left hand. I had been taking aspirin, ibuprofen, and Tylenol but they do next to nothing. At that time the doctor prescribed prednisone, 50 mg, within about 5 hours I felt almost normal. I was able to reduce that within weeks to 20 mg and now about 3 mg. I find I must be careful about tapering and try to go in 1/4s at this time. It is now spring 2014 and PMR is still with me.

Comment from: ziggie, 65-74 Female (Patient) Published: January 16

My polymyalgia rheumatica came on very suddenly. I went to bed very healthy; by 3 AM I had a very severe pain in my right side. I screamed with pain every time I moved or tried to move. The emergency room couldn't diagnose me, this was over Memorial Day so I had a weekend of unspeakable pain. It left my right side and went to my entire left side in one day including my head and both feet. I couldn't walk without two people helping me. I finally gave in and called an ambulance for myself and went back to the emergency room. There was an older doctor there who said there was only one more test to run. My sedimentation rate came back very high. He gave me a shot of cortisone and a prescription for steroids and sent me to a nursing home. After 5 days on steroids I felt wonderful. But when I was discharged without steroids, the pain returned, especially in my feet. I went to see my family doctor who started me on 20mg of steroids in the morning and 20 in the evening. I felt so good. We've been reducing the drugs and my sedimentation rate continues to be low. I'm down to 5mg a day and will be reduced again on 1/31/14. I am 71 years old and was in perfect health. Side effects of the steroids are awful, balloon face, weight gain, always hungry. I'm told it usually doesn't return. I hope it doesn't.

Comment from: memo, 65-74 Female (Patient) Published: November 01

I was diagnosed in October 2011. It affected both hands at first. I was unable to close them and had extreme stiffness and pain especially in the morning. RA (rheumatoid arthritis) was negative and sedimentation rate was 70. After being treated with NSAIDS and Celebrex, which did not work, it spread to arms shoulders and neck and upper thighs. I tried a Medrol pack with instant relief, and was diagnosed with PMR (polymyalgia rheumatic). I have been on prednisone 2 years now. I started at 20 mg, finally weaned to 5 and it all came back with a vengeance this summer. Now I am on 12mg and barely holding. I did not notice the fatigue until this summer and now must submit to daily naps.

Comment from: dkj71156, 45-54 Female Published: December 02

I was just diagnosed with polymyalgia rheumatica (PMR) on October 31, 2008. I started hurting at the end of August 2008. It started with me not being able to use my right foot to push the pedal that I use to type with. (I do medical transcription at home.) Then my knees started hurting, and it progressed to my low back, right hip and buttocks and down the back of my right leg. I could not lift my right leg behind me like to put on clothes, socks and shoes, get in and out of the car, etc. I then had to start using a cane. I felt as if I had the flu and that someone was sitting on me. I had no energy at all. I usually have a high tolerance for pain. Then I thought it was just in my head. Finally, I went to the doctor. My RA factor was normal but my sed rate was elevated. I took some OTC anti-inflammatories, but nothing helped. She then ordered a Parvovirus human B-19 test, sed rate, CRP and another RA. My parvovirus was positive; the RA was still negative; my sed rate had gone up (68); and my CRP was 50. She then sent me to a rheumatologist, which took a while to get into, and she diagnosed me with PMR. I have been on Prednisone now since November 2, 2008 at 10 mg per day. Most days it works, but today, I am hurting. Right now, both of my shoulders, my right wrist, right knee and both buttocks hurt. When I feel really good, I wonder if there is really anything going on, and then just like today, it brings me back to reality.

Comment from: Mike p, 55-64 Male (Patient) Published: December 11

I was diagnosed with polymyalgia rheumatica at only 48 years old after 8 years. I am finally off prednisone but in a lot of pain just about everywhere and fatigued. I gained weight as I reduced the dose when I thought I would lose it. I am getting a bit depressed about the long term prognosis.

Comment from: Lullu65, 65-74 Female (Patient) Published: November 12

I haven't been officially diagnosed but I know I have polymyalgia rheumatica (PMR). I have long term rheumatoid arthritis (RA). Eighteen months ago I had to come off Remicade as I started to break through it and soon after my shoulders and arms started to become excruciatingly painful. I've been on and off prednisone ever since, now restricted to 5 mg daily. I started methotrexate a year ago and have been taking Actemra for four months. Bottom line is the PMR is completely messing up any progress I am making with the methotrexate and Actemra.

Comment from: SANDYBB, 65-74 Female (Patient) Published: August 21

I wonder if anyone gets tremors after physical or mental stress. I'm refusing prednisone and it's killing me but I don't want any more weight gain and ruining my eye sight. My inflammation markers are high. I have had polymyalgia rheumatica for 2 years. Hard to live like this. Ugh.

Comment from: Sue P., 55-64 Female (Patient) Published: June 19

I have had joint pain for years in my hip, back and knee. Doctors have always put it down to osteoarthritis (OA) which has shown up on MRIs. I haven't lost any weight but my legs don't feel attached to my body, they ache so much, and are very sore, tender and painful. I've recently been diagnosed with a meniscus tear in my right knee as well as OA. I have 4 herniated spinal discs and OA in my right hip too. I'm only 62 and used to swim each day but I finding it hard to even walk or drive some days and I suddenly need to sleep, and I can be for 2 hours absolutely out but sweating dreadfully. I wonder if it could be polymyalgia rheumatica. I'm seeing my general physician on Friday and I want to ensure he does more blood tests. My inflammation markers were normal a few months ago. Thank you.

Comment from: Annette, 55-64 Female (Patient) Published: May 21

I am in a lot of pain all over my body because of polymyalgia rheumatica. My knee hurts.

Comment from: Lynne, 65-74 Female (Patient) Published: April 18

There is no cure for polymyalgia rheumatica. It will go into remission but could flare at any time. Prednisone is the only drug that decreases the pain so some normality is possible. Reducing too quickly can cause a flare. My rheumatologist suggested 2 or 3 mg for the long term. I have had three flares in 6 years. I am now on 3 mg. I have been on prednisone for the past 18 months and will continue for the next two years. I don't want another flare because each time I flare I gain 20 lb. I lose the weight between flares but it is very depressing losing then gaining.

Comment from: Mia, 65-74 Female (Patient) Published: January 12

I have had polymyalgia rheumatica (PMR) for at least fifteen years. I never experienced any type of remission like many patients do. I was finally able to maintain on a 5 mg dose of prednisone per day after taking higher doses. I am happy with this dose and have not experienced any serious side effects, with my bone density tests being fairly normal and other areas of my health being good. Now I have a new, young rheumatologist who has decided that I have been on prednisone for too long and asked me to start reducing it down by 1 mg per month. I did fairly well on 4 mg, but experienced a sharp increase in pain at 3 mg with the return of many of my symptoms of weakness and pain in all the large muscles of my body, mostly hips to knees and shoulders to elbows. He refuses to accept that my symptoms have returned and still insists that I need to get completely off the prednisone, even making me feel that my symptoms are all in my head. His basis for feeling this way is because recent blood work shows my SED rate as normal, and he insists I can't have PMR if my SED rate is normal. I don't agree based on different things I have read, and I would like other's thoughts on my situation.

Comment from: sharcom, 55-64 Female (Patient) Published: September 19

I have been a polymyalgia rheumatica survivor for 3 years. I was diagnosed 6 months after having all of the regular symptoms; had success within 48 hours of the 20 mg prescribed. I have been on 3 now for the past 6 months. I don't know if this is polymyalgia related or not but for the past 6 months my bowel movements have been abnormal and as time has progressed I have had more pain in the rectal muscle and pelvic floor. It is harder to have bowel movements and it's almost like my female area and sphincter muscle go into spasm with terrible pain and pressure. In combination with this I have also experienced increasing fatigue. So I am waiting for ultra sound and colonoscopy but in the meantime I'm wondering if anyone else has experienced this other muscle inflammation area and if it is polymyalgia related and could be relieved just from upping my prednisone again. Thanks.

Comment from: Holly , 55-64 Female (Patient) Published: June 26

I am wondering about others' fatigue. The pain, even on prednisone, is more manageable than my tiredness. I was diagnosed with polymyalgia rheumatica past winter.

Comment from: Bunny, 65-74 Female (Patient) Published: May 09

I posted on here back in 2016. Update now has me with the giant cell arteritis diagnosed with a biopsy. I was on 60 mg of prednisone for polymyalgia rheumatica. After being on prednisone I wound up with numerous blood clots in both lungs. I was in hospital 1 week. Still after months have 1 clot remaining in right upper lung. Here I am today May 8, 2017 just started on Cymbalta down to 10 mg prednisone. I tried to go to 5 and could barely walk. I have had all the lung tests available. I hurt and the fatigue is overwhelming at times. I will get a cardiac catheterization soon to see why my heart is acting up. That is my story from a high functioning female to one that hurts all the time. My knees are taking a beating at present. I will stop whining now.

Comment from: wills, 65-74 Male (Patient) Published: March 22

I have had symptoms of polymyalgia rheumatica for years, very painful feet, general aches and pains all over, and flu like symptoms after exertion. The last few weeks I have developed shoulder pain. I went back to my general physician who said to try prednisolone, that was two days ago. I rode my bike today for the first time in an ages, I wonder if this is polymyalgia.

Comment from: Baroness, 55-64 Female (Patient) Published: November 17

I was diagnosed with polymyalgia rheumatica 2 years ago. I was started on a course of prednisolone but gained so much weight and had other side effects. My doctor put me on hydroxychloroquine and although I still get some pain it's much more manageable.

Comment from: amyinaustin, 45-54 Female (Patient) Published: November 05

I was diagnosed with polymyalgia rheumatica over a year ago, and 25 mg of prednisone worked great immediately. I tapered off the prednisone several months ago and it came back. I am on 30 mg now and I still have some pain in hips and up the neck. My rheumatologist only sees me every 3 months or so and has told me to stay the course. I am not liking the pain after being pain free before and worried that the pain will never go 100 percent away unless I increase, but not liking prednisone either.

Comment from: RoseBud, 55-64 Female (Patient) Published: October 28

With polymyalgia rheumatica I cannot stand or walk without sitting down for a short while before continuing whatever I may be doing standing or walking.

Comment from: Margaret4543, 75 or over (Patient) Published: September 01

I am an elderly woman who suffered transverse myelitis some 15 years ago, but recovered within a month, with only slight leg weakness left, on the right lower side. This last 3 years the weakness has increased, so that foot, thigh and calf muscles are often painful, although the joints seem flexible and pain free. This month I have developed pain in the long muscles of the arms, shoulders and neck, and some hip pain. I await the results of the blood test for polymyalgia rheumatica. I understand this condition is not the same as fibromyalgia.

Comment from: 75 or over Female (Patient) Published: June 09

I have had polymyalgia rheumatica for a year, on 4 mg prednisone now after my sedimentation rate remained stable. Lately, I have been battling intense fatigue and weakness, especially of lower extremities, which sent me to a neurologist who tried to find a neurology cause such as myasthenia gravis, multiple sclerosis or Parkinson's, all of which proved to be negative. I often have severe debilitating headaches and decreased vision and am wondering if it actually is polymyalgia that is causing all these problems.

Comment from: Carpside, 65-74 Female (Patient) Published: March 17

I have had polymyalgia rheumatica for 10 years now and I have been taking steroids for all that time. It goes away for a few months then suddenly flares up again so then I have to increase the steroids. But for the last three weeks I have been in constant pain in both my knees so bad that I have to keep sitting down, the pain is just like a nagging toothache. I have tried to get in to see my doctor but I have to wait until the end of March which is ridiculous when you are in server pain, so I have requested a blood test which I have had today.

Comment from: David, 55-64 Male (Patient) Published: July 31

I too had the pain and stiffness in the buttocks and shoulders and it was not diagnosed correctly as polymyalgia rheumatica for three months, while I was turning to stone overnight each night. I started off on prednisone 15 mg and got down the 2 mg over 18 months. I think it's back again so I'll be taking it up again and will taper down again. You guys need calcium tablets and alendronic acid tablets to look after the bones and the kidneys while on prednisone.

Comment from: Myrna, 75 or over Female (Patient) Published: March 26

My polymyalgia rheumatica seemed to start with stiffness in the entire body, starting in the neck. I had extreme pain in the muscles all over my body. I was very tired, but I thought that was due to the need of my B12 injection. I was diagnosed with a B12 deficiency back in 1997. I have been using my reading glasses more than usual lately, I thought maybe some tissue was growing over my eye lens again, that happened before, after I had cataract surgery. I am 80 years old.

Comment from: Makaidog, 65-74 Male (Patient) Published: October 08

I became aware of polymyalgia rheumatica virtually overnight, but I didn't know what it was. I immediately went to the doctor, but he also was stumped. One week later, with such severe pain in my shoulders and hips that I had to work just to get out of bed, I went to the doctor again, and he ordered blood and urine tests to focus on indicators of polymyalgia rheumatica. Confirmed, I began taking prednisone and after one day the pain was gone. I felt as if a miracle had given my life back. That was 2 months ago. I am now on my first week of no prednisone, and so far, so good. I am back to running 40 miles a week and looking forward to the Honolulu Marathon in December.

Comment from: mamasu, 55-64 Female (Patient) Published: February 10

PMR has tried to consume me. In October of 2008, after a very busy summer, I was stricken with unbearable pain in both of my hips, my knees, my wrists, my shoulders, and my hands. At a visit to my doctor, I convinced her to give me a shot of steroids. I have taken it before with a long history of chronic back pain. I felt brand new for about 10 days to two weeks. I then started NSAIDs about 1,200 mg daily, but they didn't help. After a trip to my rheumatologist, I was told I have PMR. I was started on 16 mg of steroids and am now on the first day of weaning off of them. I'm on 8 mgs today: So far, so good.

Comment from: Pam, 55-64 Female (Patient) Published: February 10

In April, I awoke one morning so stiff that I could barely walk. This went on until July when I figured I needed help and was not just getting old. I am now 63; I was 62 when it started. It progressively got worse. Finally, I was diagnosed with polymyalgia rheumatica and put on prednisone. Lately, I have been unable to talk; it's almost like laryngitis, but I have had it for more than seven weeks.

Comment from: alex, 65-74 Female (Patient) Published: February 10

I first started having pain about four years ago only in my shoulders and hips. My doctor diagnosed PMR from a blood test and put me on prednisone, which helped immediately. I was gradually reduced from the prednisone until I finally was free from pain. The pain and soreness returned last year, and sure enough, my sed rate was elevated again. I have been on prednisone again since May 2008. My symptoms return every time my doctor tries to reduce the prednisone. I am very tired and sore most of the time, and I have gained weight. I am a 67-year-old female.

Comment from: Susie, 55-64 Female (Patient) Published: February 10

I was diagnosed with PMR in August 2008 after about six months of extreme pain, limited ability to move, and exhaustion. My doctor gave me 20 mg of prednisone a day and has gradually reduced the dosage. Now I am on 5 mg a day. It seems to be going well, except that in the last few months, I have developed an intense pain in my outer right calf. Some days it is not as severe, but during the last week, it has just about caused me to fall. A stabbing pain occurs in my right let, bit it's not always in the same area. For the last two days my inner right calf has become swollen.

Comment from: rosie58, 45-54 Female (Patient) Published: February 10

I have just been diagnosed with PMR. I had pain everywhere. I have never experienced pain like this before. After a few trips to my doctor's and finally the emergency room, I was diagnosed. I started on 50 mg of prednisone and am tapering down 2.5 mg every 10 days. The pain has gone, and my life is back, but the side effects of the prednisone are horrid. My face is ballooning, as is my body.

Comment from: 65-74 Female (Patient) Published: January 09

My first symptom was a pain running from my groin down my left leg into my ankle. The pain soon expanded to my upper body with the most intense pain in my upper arms. It felt like a swarm of hornets in constant stinging mode. The range of movement for my arms became reduced to a few inches one way or another. My shoulders also ached. The pain migrated. The pain increased with nightfall, and mornings were the worst, as the body stiffened with sleep and each muscle had to be gradually worked to get the circulation going. Getting up, finally, and walking brought some relief--circulation and movement seemed to lift some of the most intense pain. My fatigue was severe and I found myself hyperventilating after the smallest exertion. The pain and fatigue totally consumed me. I was never bored as one is with most illnesses after a number of days. Not so with PMR, as every effort required a thought-out strategy and was accompanied by much pain.

Comment from: 45-54 Female (Patient) Published: December 17

My doctor thinks I may have Polymyalgia. I am taking 15 mg prednisone at breakfast for 1 month then I think he will evaluate me. Does anyone that is suffering from this condition also have problems with their calves after walking just a short distance? I am a 54 year old female in great health other than this annoying pain and stiffness. Great cholesterol levels of 117 blood pressure127/79. Average weight, but this stiffness and pain makes me feel as though I am 90. My calves ache and feel heavy after just a few minutes walking. Prednisone makes me feel better, but my calves are not better. Have any of you gained a lot of weight from the Prednisone or are you anemic? Does polymyalgia usually go away at some time?

Comment from: Gramma, 65-74 Female (Patient) Published: December 02

I was in tremendous pain. My muscles felt like they were being torn out by “the roots.” My doctor kept saying it was arthritis. I kept telling him it was in my muscles. I couldn't tell the difference. It got to the point where I couldn't stoop over to pick up something from the floor, and I could not reach anything higher than my head on a shelf. I needed help to dress myself, and I was extremely tired to the point of sleeping away many of my days. I even got to where I was uneasy about going out in public for using public bathroom facilities was very risky. It was extremely difficult to just get up from the seat! A time or two I felt as if I might have to wait for someone to come by and have them get me some help. I just barely managed to not do that, but it was still embarrassing. My polymyalgia rheumatica was finally diagnosed by rheumatologist. Prednisone was prescribed at 40 mg daily at first, and then I was able to gradually decrease the dose. I will have to be tested every six months for the rest of my life, as I understand it now. But my, oh my, it does feel good to not be in such pain!

Comment from: ddmacd5, 75 or over Male (Patient) Published: November 14

I was awakened in the middle of the night by severe pain in my right hip. I thought that my hip was broken! The pain and restriction of Movement was in both hips. I could not reach my doctor at that time and "urgent care" was not helpful. Then it hit my shoulders suddenly and severely. Now I was essentially an invalid. I could not lift my feet more than 6 inches. I could not lift my arm as high as my shoulder. Walking was painful, and swinging my arm while walking was painful. Putting socks and shoes on or off was nearly impossible. We found a new doctor who suspected PMR and ordered blood tests. The tests confirmed it. He started me on 20 mg prednisone to be taken in the morning. When I got home, I thought "How am I going to get through the night?" The over-the-counter painkillers did not last through a night. So I took the prednisone at bedtime. I slept through the whole night! No pain when I awoke! I moved my arms and legs with no pain! Full movement of all arm and leg joints with no pain! It was incredible! I felt like I had a new body!

Comment from: penelope, 65-74 Female (Patient) Published: November 14

My symptoms started with severe pain in my right shoulder. Over a couple of weeks, my shoulder was swollen so my doctor gave me a steroid injection in my shoulder and arranged physiotherapy. A week later I had pain in my neck, left shoulder and thighs. I felt as if I had the flu. My doctor then arranged a blood test which proved that I had Polymyalgia Rhueumatica, which is now being treated with steroids. I am 65 years old, retired, and also have an underactive thyroid which causes me stress and intense hot flushes. I have suffered from this for 15 years and they are getting much worse. My doctor has put me on a higher dose of thyroxine (200 micrograms a day).

Comment from: jdmxcfp, 75 or over Male (Patient) Published: September 30

I ached all over from my polymyalgia rheumatica, primarily in the shoulder area. I could hardly get out of a chair, and although I was used to walking two miles per day at a brisk pace, one morning I could hardly walk 20 yards. Two days after using prednisone, I felt 15 years younger. I am now on 5 mg per day and have been for about seven years.

Comment from: Dianejohnson1, 45-54 Female (Patient) Published: May 30

I was finally diagnosed with polymyalgia rheumatica in February. I have been on prednisone since, varying dosage. I have had horrible chest pains and am now seeing a gastroenterologist. I don't know if they are related, but it happened within a few weeks of each other.

Comment from: Pop, 65-74 Male (Patient) Published: March 13

After 1 year on prednisone my doctor put me on methotrexate also for polymyalgia rheumatica. I took both for over 1 year before I chose to stop both. I have been fine since, about 7 years.

Comment from: Rene, 55-64 Female (Patient) Published: July 26

I am miserable. I believe I have fibromyalgia rheumatica. I saw a specialist who wants me on all these medicines like methotrexate and I refuse to take it. I'm on low doses of prednisone and I'm scared of that.

Comment from: Deb, 65-74 Male (Caregiver) Published: March 22

Within a week of getting a shingles shot, my husband was diagnosed with polymyalgia rheumatica. His immune system has not been the strongest, and perhaps should not have been a candidate for the shot.

Comment from: Linda, 65-74 Female (Patient) Published: August 08

Two days after a shingles (live) immunization, I awoke with an inability to turn my head from side to side, pain across my shoulders and back. I would be interested in knowing if anyone else has had this association following a live vaccine.

Comment from: Sam, 25-34 Male (Patient) Published: December 06

My symptoms were closed jaw and stiffness in my neck, hands and shoulders.

Comment from: Martyn, 65-74 Male (Patient) Published: August 01

In February 2013 had sudden onset of muscle pain in back and chest with painfull muscle spasms. I could not get out of bed without severe pain, could not get dressed without help. This condition came on so fast, only 3 days from feeling great to being an invalid! I saw my doctor and thankfully he had had PMR 4 years previuosly! He prescribed 25mg of prendisone and I was a new man within 48hrs. 4 weeks later I had severe pain shooting down the back of my head. A return to the doctor confirmed I had GCA. A specialist increased my medication to 50mg for 4 weeks followed by a blood test. My medication has gradually been decreased every 2 weeks since then. I also have had a blood test every 2 weeks to keep a check on the indicators for PMR. At the moment (July 2013) I am almost pain free so hopefully I will continue to improve.

Comment from: kathy92755, 55-64 Female (Patient) Published: May 13

I started with knee and shoulder pain. I went to the doctor, got X-rays, and was told to go to therapy. The therapist thought it was my hamstrings being tight in my legs. I went to therapy for six weeks and it did not relieve the pain. I returned to the doctor again and was told I had PMR. I immediately started with prednisone for nine days and instantly felt relief. After the nine days were over, the pain came back. Without the prednisone for two weeks I went back again to the doctor's and am now on it for 21 days at 20 mg doses. At 57, I have always been an active person and wondered why I got this. I do not want to be on prednisone forever, but at least it helps to make life easier.

Comment from: Donna, 65-74 Female (Patient) Published: January 09

My PMR came on overnight in 1997. Now I have rheumatoid arthritis and osteoarthritis. I have been in and out of hospitals thanks to the many years I've been on prednisone. My immune system isn't much good these days.

Comment from: Mermaid, 75 or over Female (Patient) Published: January 09

I have recently been diagnosed with polymyalgia rheumatica, but I didn't go to a doctor for the past two years because I thought the pain was caused by my obesity. I am no longer obese, but I wake up at 4 a.m. most mornings by pain in my hips, back, upper arms and shoulders. It's awful. Rarely the pain clears up later in the day. I have chosen to try painkillers for a while because of the side effects of steroids.

Comment from: Iowan, 55-64 Female (Patient) Published: January 09

After suffering pain from my hips to my knees, and then from my neck to my elbows, and getting no relief with chiropractic treatments, my physician quickly diagnosed PMR. It was confirmed with blood tests. I started on 40 mg of prednisone, which almost overnight brought such relief that my fears of becoming paralyzed were alleviated. A visit to a rheumatologist was ordered, and I see him every six months. Symptoms are usually controlled at only 3 mg prednisone per day. I will be retiring in a month and hoped to be added to my husband's health plan. However, today I was denied health care coverage because of PMR.

Comment from: Bev, 65-74 Female (Patient) Published: December 02

I had polymyalgia for four years. It all started with stiffness and soreness in my muscles. If I remember right, it started in my hips, but then it went wherever it felt like. It went away about two years ago. It was horrible and affected my total life. I was on Prednisone, which I would prefer to stay away from, and all kinds of painkillers. Now it appears to be coming back. I am getting terrible pains on the side of my head, constant sharp pains. I have gone for another series of tests and am awaiting the results.

Comment from: FN, 65-74 Female (Patient) Published: November 14

I have just been diagnosed with PMR and have started taking predisone. I have led a very active life and my doctor said within a few days I should see a big difference and in two weeks, I should be back to my old self (sure hope so). My aching is in my lower back as it hurts to sit, walk, etc.

Comment from: jaffacake, 35-44 Female (Patient) Published: November 14

Mine started slowly. I had pain in both buttocks which felt like I'd done an exercise class. A few months later it had spread to my hips and both hamstrings. A couple of months after that, both my shoulders started hurting if I raised my arms. I am a 44 year old female.

Comment from: Valmai, 65-74 Female (Patient) Published: October 23

I am recovering from my fourth attack of polymyalgia rheumatica. Apart from the aches and pains I also get disoriented and confused. I have a lot of discomfort in the liver area. I find the attacks come on quite suddenly although this last attach, which happened after three years, was accompanied by an infection that put me in the hospital for three weeks. I also lost weight around the hips.

Published: October 23

I suddenly had pain in my shoulders, which progressed down to my wrists and hands. The back of my neck and shoulders were constantly burning and knotted. The pain spread to my hips and buttocks and it was very difficult to get up from a chair and even the toilet. I couldn't sleep because of the pain and couldn't even move to change my position. I needed help to get dressed, and most other activities of daily living. I was finally diagnosed with polymyalgia rheumatica after a nightmarish three months. I'm now on prednisone taper, and I've got my life back.

Comment from: Female (Patient) Published: October 13

I was at work when it started. I walked from the back to the front of the store, and by the time I got there, I was on my knees. It took three months to find out I had polymyalgia rheumatica. That was six years ago. I am trying to wean off prednisone. I take two tabs a day. I am in a lot of pain, which I guess will never go away.

Comment from: 55-64 Female (Patient) Published: October 09

With my polymyalgia rheumatica, I started having pains in my back, then shoulders, hips, groin, and the back of my legs. It seemed that even my joints in my fingers, wrists and knees were very painful, the worst being upon getting up in the morning, or sitting at my job for a few hours.

Comment from: Emily, 75 or over Female (Patient) Published: October 09

I had polymyalgia rheumatica about five years ago, and after six months on natural treatments, I was completely free of symptoms. Just recently I am experiencing a lot of muscle pain and stiffness in my right arm, shoulders, and low back. I'm going to have a blood test to see if it's back. I am 76 years of age and live a fairly active life.

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