Patient Comments: Polymyalgia Rheumatica - Diagnosis

Question:

How was your polymyalgia rheumatica diagnosed? Submit Your Comment

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

I was initially given the catch all fibromyalgia diagnosis, I was at rock bottom and went for more blood test results with little hope of improvement. This particular general physician asked me for the 'story' of my symptoms and then said that he was almost certain that I had polymyalgia rheumatica (PMR). He wanted a further round of blood tests immediately and prescribed 25 mg of steroid. He said that if I got significant improvement within 2 or 3 days, it was PMR. I did improve and I was able to lie down in bed again after a week!

Comment from: MML11, 45-54 Female (Patient) Published: March 15

I am 46 years old and have been in severe pain for 4 months. It started with all over stiffness which was worse in the morning or after sitting. I then developed deep pain in my groin, buttock, and hips. Shortly after that my neck and shoulders were horribly stiff, especially in the morning. My ESR and C-reactive protein more than doubled within a two month span. I have been to my primary care physician a few times and have a preliminary diagnosis of polymyalgia rheumatica. I had to beg to try steroids, which took away 75 percent of my pain overnight.

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

My family physician suspected polymyalgia rheumatica and did blood work. C-reactive protein (CRP) was extremely elevated (and a few other things were abnormal). A second blood test a week later showed the CRP had almost doubled from 47 mg/l to 76 mg/l. Lime disease and West Nile virus were ruled out, as a precaution. I started on prednisone, which began to give relief within 12 hours.

Comment from: Tim, 35-44 Male (Patient) Published: September 11

I have been suffering for the last year with polymyalgia rheumatica. I have been to 20 doctors. None of them had any ideas or diagnosis. I have had herniated disc, back surgery with an artificial disc replacement, broken bones, and shingles, but none of it compared to this pain. My pain started in my neck and shoulders, and then hit me in my low back, hips, groin, and then continued down my legs, quads, calves, and feet. I also had lots of strange facial pain. Prednisone was only fix.

Comment from: Kez, 65-74 Female (Patient) Published: March 28

I just turned 69 when I was treated for bladder infection. Two weeks later my hips and back became so sore I could not walk properly. I had extreme pain and weakness through my body especially the bladder, and when I woke one morning I could not move. Wheel chair was needed to move me and I was so scared thought I had had a stroke. I got to the doctor's and he said it was border line leukemia. I was diagnosed with polymyalgia rheumatica 24 hour hours later; what a journey! Prednisone and methotrexate were prescribed. That was nearly 2 years ago, I was feeling wonderful, and back to work even though I work from home. Off steroids yay! Too soon. Two weeks later my bladder once more is inflamed, all symptoms are back, I guess I will have to go back up on prednisone again. I must admit though I felt almost 100 percent on medication. No depression, but a very calm feeling till I till I stopped steroids.

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

I had polymyalgia rheumatica symptoms and had a blood test.

Comment from: D Ives, 55-64 Female (Patient) Published: May 23

I have noticed that lots of the comments note that they had no inflammatory markers in their blood test results. My polymyalgia rheumatica (PMR) specialist told me that 15 percent of patients with PMR will not show any inflammatory blood markers and he diagnosed me by testing my joints with pressure in key places (e.g., knee, elbows etc.). I had seen a lot of doctors/specialists who did not know this, so I mention it here in case you, like me, are in the 15 percent of PMR who suffer with no blood inflammation markers.

Comment from: Clive, 65-74 Male (Patient) Published: January 25

I was diagnosed with polymyalgia rheumatica, I had very bad shoulder pains (referred pain) and my legs trembled if I got stuck in the traffic! The rheumatologist put me on prednisone 5. It gave instant relief! After 8 weeks treatment I did not take medication and all my pains were back. I cannot do my kitchen fitter trade. Do not have much strength left.

Comment from: Saralola', 45-54 Female (Patient) Published: March 08

I have asthma and am on Symbicort and ProAir inhalers plus Singulair on a regular basis. I got a virus 14 days ago that set off asthma and then bronchitis. I started myself on prednisone and an expectorant on the fourth day when it got worse. Three days later my chest was 'bubbling' with wheezing and I saw my primary physician. He added an antibiotic to be safe and told me to call back the next morning. The next day I could only blow 150 on my peak flow meter and called him. He put me in the hospital and I was there for five days under the care of a pulmonary specialist. I'm home but struggling to breathe and with extreme tiredness. I saw my regular pulmonary specialist yesterday as part of the follow-up. She noted I'm still very congested and that it's going to take a long recovery period. One doctor told me it takes three months to get over a lung problem like this, whether you're 25 or 75. This is disheartening but at least I know why it's so hard and so slow to improve. But it will.

SLIDESHOW

What Does It Mean When Your Whole Body Aches? See Slideshow
Comment from: jefrica, 55-64 Female (Patient) Published: March 10

My polymyalgia rheumatica (PMR) had a fast onset. My range of motion became severely limited, my husband had to help me get dressed for work each day. I continued to work although every move was painful. I went to my doctor who had no idea what was wrong with me. I researched my symptoms and diagnosed myself. I returned to my doctor with literature substantiating my proposed diagnosis. She was unwilling to give me a trial of prednisone and instead, prescribed tramadol for my pain. While this enabled me to sleep, my pharmacist cautioned me not to take it because I am allergic to codeine products. After four months of suffering, my husband took me to a local walk-in clinic where a wonderful internist ran every lab test he could think of to rule out a variety of other conditions. He also prescribed prednisone 10 mg daily and stated that this was the best way to determine the presence of PMR. One dose alleviated all of my symptoms and gave me my life back. I remained on prednisone for about 18 months, tapering to my symptoms. I have been symptom free for two years.

Comment from: sarniajim, 75 or over Male (Patient) Published: February 16

I was first diagnosed with polymyalgia rheumatica probably about 10 years ago. My family doctor did not know what my problem was so I went to the emergency room and the doctor there took blood tests and found that my SED rate was high. I was put on prednisone and almost immediately I felt better. I finally was referred to a specialist who confirmed the diagnosis. He sent me for weekly blood tests, unfortunately he retired and I was back to my family doctor. I seem to be having regular recurrences of the disease. I started at 20 mg a day and tapered off. I was down to 5 mg a day when I had my last flare up. I am 87 and will probably go up and down on the medication for the rest of my life.

Comment from: SavannahSandy, 65-74 Female (Patient) Published: April 16

I awoke with searing pain in my left groin. It was difficult to walk. In a day, the pain spread across a band around my hip girdle; buttocks, down both thighs and lower spine. My physician ordered an MRI and sent me to therapy, claiming that all the pain was probably referred from my back. All pain became more severe. I visited my neurosurgeon. He ordered two more MRIs, one of my shoulder and another of my upper spine. There were also a series of x-rays... all, in my uneducated opinion, not necessary. At the end of three months, I was able to see a rheumatologist. My own physician did not help make this appointment. I "present" exactly like any definition of polymyalgia rheumatica (PMR) except my blood tests are fine. I am on a very low dose of prednisone, and the doctor took me off both the Cymbalta and meloxicam I had been taking for atypical fibromyalgia, and put me on Lyrica. Pain remains but not severe. I will be 70 next month. I have been extremely fit my whole life as a swimmer, runner and fitness instructor.

Comment from: Margaret, 55-64 Female (Patient) Published: April 11

I had suspected myalgic encephalomyelitis (ME) 25 years ago and things have never been the same since in terms of my fitness, weight problems and energy levels but despite that I have lived a relatively active life. I moved to Spain for the sunshine 6 years ago and it has been a hectic time, I have had some back problems for years following use of an exercise machine which I have tried to cope with by exercise and physical therapy. When it first happened the doctor just sent me for physiotherapy. I saw a doctor two years ago who basically just told me to get fitter. This winter though, I have deteriorated badly. Muscle and joint pain have reduced my mobility considerably, I couldn"t walk far and was in real pain after sitting for a while, and I couldn"t get out of a chair (or up from a toilet) unless I could push up with my arms, resulting in worsening shoulder pain. I also have some pain and tingling in one wrist and hand. I saw a new doctor and she immediately suspected polymyalgia rheumatica (PMR) but, to her surprise, the blood tests showed nothing. None the less she started me on prednisone, 50mg in the morning, reducing at ten day intervals. I thought it was just wishful thinking when I felt better the first day but it has continued and I am greatly improved. I am due to take the first reduction in two days. Very early days for me, great to feel some relief but I am concerned that there is no indication in my blood tests and also at the prospect of long term steroid use. Still, that sure beats the constant pain and immobility.

Comment from: Dominic , 45-54 Male (Patient) Published: August 31

Please don't rule out Lyme as a cause for polymyalgia rheumatica (PMR). There are 7 co-infections ticks carry. Some are worse than Lyme, one is babesiosis (Babesia). I went through agony for 17 years. I saw 8 or 10 doctors, with most saying I was suffering from depression. In 2008 I had Western Lyme blot with co-infection test. I was positive for Babesia; after 17 years all my joint cartilages are destroyed. Railroad put me on disability in 2010. Now for 6 days I have so much pain I can't get out of bed. I am wondering if this is PMR. I have heavy painful legs, weakness and fatigue; I'm at my breaking point.

Comment from: Tiger12, 35-44 Female (Patient) Published: July 11

I was just diagnosed with polymyalgia rheumatica. I have pain in my shoulder, hips, thigh, lower back, and knees.

Comment from: Hurdles, 65-74 Male (Patient) Published: January 03

My body just went stiff after a long flight whilst going on a cruise. It was very, very painful and although the ship's doctor did her best the treatment did not help with the intense pain, and the flight home was a nightmare. However my general physician soon diagnosed the problem as polymyalgia rheumatica and put me on steroids which have helped a little. Although I am still having problems things are a little easier but l am still very stiff and find it difficult walking.

SLIDESHOW

Pain Management: Surprising Causes of Pain See Slideshow
Comment from: Monica, 65-74 Female (Patient) Published: May 11

I'm a 41 year old female and ruptured my right Achilles 6 weeks ago playing volleyball. I work out 5-7 days a week, but hadn't played volleyball in 20 years. I was on my third game when it happened. I simply went up on my toes and looked behind me thinking that a ball hit me really hard in the ankle. When I couldn't walk normal I knew something was terribly wrong. My primary care physician told me to rest for 2 weeks and do physical therapy. Ha! I decided to have surgery since I'm relatively young and very active.

Comment from: Memar, 45-54 Male (Patient) Published: October 02

I'm not sure if chigger bites is what I have but what I have has been going on for years; I went to plenty of doctors. I have got on both the top of my arms this bite from inside my arms and it hurts. I scratch it and I also get a mark. I can't stand it anymore it is really driving me nuts. My doctor took blood and saw nothing. I just don't understand there is something in my body and I need to find out why this keeps on happening to me.

Comment from: mikevietvet68/69, 65-74 Male (Patient) Published: December 29

In 2014 after a large snow storm I ran a snow blower for 5 hours, around the neighborhood for neighbors. Two mornings later I felt pain in my upper body. I was in great pain and thought it was from the workout with blower. It continued for two weeks to where I, like others on here, could not get out of bed. I had to be dressed and felt terrible. I went to a doctor close by. He diagnosed me with polymyalgia rheumatica (PMR), but I really did not believe him but took 40 mg of prednisone which made me feel like superman. Three weeks go by and I was off it and it came back worse. I went to a rheumatologist and he assured me the first doctor's diagnosis was correct. Today is Christmas 2014 and I had to take 20 mg to function to see grandkids. I was/am on 5 mg daily but I'm not good with that dose. I also have diabetes and try to keep sugar down but PMR has me living a terrible retirement. I have been out 5 years December 1st from being a construction worker for 40 years. I did not think I would feel this bad in retirement.

Comment from: edulm1038, 75 or over Male (Patient) Published: September 19

My polymyalgia rheumatica (PMR) came on in early October 2013 with intense pain shooting from both wrists up my arm awaking me. This occurred on two consecutive mornings. Following that I felt terribly bad (achy) in my upper body. Two weeks later early morning pain in both upper arms extending down my arms woke me. This occurred on two consecutive mornings. Inflammation was detected with blood work and my doctor prescribed prednisone, starting with 10 mg and getting up to 30 mg. My symptoms were not pain but just feeling terrible at various places in my upper body. Now, late September 2014, I am down to 10 mg but I still have the severe symptoms daily, some worse than others. Again, I do not experience pain just feeling terrible in my upper body.

Comment from: Pete, 65-74 Male (Patient) Published: May 21

Came down with it 6 weeks ago. I thought it might be a nerve problem in neck which I've had twice especially when my neck got stiff with pain 2 weeks ago. My son-in-law said it sounded like something else and had me get a CRP test. Had a high reading, 5 times normal. He had me start Prednisone 2 days ago and about 65-75% of the pain is gone. I have no history of PMR and have been very healthy walking 7-9 miles a day. I take Glucosamine/Chondritin daily.

Comment from: EmmaSue, 55-64 Female (Patient) Published: March 22

I lifted a sofa for a friend last year and two days later my hips started hurting. This was so painful. I thought I had pulled a muscle because I never had pain and had always been healthy. One year later I went to my doctor and had X-rays and blood tests. We consulted with a specialist and was finally diagnosed with polymyalgia rheumatic (PMR) diagnosed. It hurts when I get up from a sitting position or when I lay down. My doctor suggested a steroid, but the side effects scare me. I am currently taking 800 mg of Ibuprofen two times a day. Are there any natural treatments?

Comment from: robert, 75 or over Male (Patient) Published: August 11

I was diagnosed with pmr two and a half years ago after initially diagnosed with temporal arthritis, I started off on 30mg of prednisolone gradually reducing over a long period to 5mg daily any lower and I started with the muscle pains again my lower back shoulders, hips and legs when walking the dog going up any incline was torture. I have regular blood tests and am seeing a rheumatologist the day after writing this to see if I can have something other than prednisolone.

Comment from: Mom of two, 35-44 Female (Patient) Published: April 04

I am a 43-year-old woman and have been suffering with one-sided back pain for more than six years. My family doctor has diagnosed me with polymyalgia rheumatic (PMR). I take Savella twice a day for the pain. It seems to work OK, but my back is always so tight and knotty.

Comment from: judidtheee, 55-64 Female (Patient) Published: March 01

About 4 years ago I was having a deep ache and pain in my shoulders and neck. Eventually the aching was all over. I could not sleep because every position made me hurt all over. I went to the doctor and she treated me for flu-like symptoms. I started thinking about my mother having PMR and how hard it was to diagnose. She went to 5 doctors before a rheumatologist ran a sed rate and then told her what she had. I called the doctor when I was still feeling awful and asked if that could be what I had. I was told "no" in no uncertain terms. Finally, on the weekend when I felt so bad I couldn't stand it, I went to the ER of the hospital where I work. I told the doctor of my concerns and he agreed with me. He ran a sed rate and CRP. Both were elevated. I was prescribed Prednisone and told to get to a rheumatologist. The rheumatologist put me on prednisone therapy and after a few weeks I was feeling much better. The treatment continued for about one year. I have had several re-occurrences but they seem to be confined to my head and jaw area.

Comment from: ToniOcean, 45-54 Female (Patient) Published: January 14

According to many statistics, I am too young to have a polymyalgia rheumatica diagnosis, but I do. Most people don't experience the symptoms until they're in their 60s, 70s or 80s. I was diagnosed after I was tested for just about every inflammatory process as we looked for the source of my constant pain. I've had knee pain for a long time. I was living with it through the use of cortisone shots and the occasional use of pain medication. I don't remember when the other pain started, but I know that I have not felt well for a long time. The pain could be described in many ways because it took many forms: stabbing, burning, throbbing, dull, aching.

Comment from: Tom, 45-54 Male (Patient) Published: August 20

I am 46 years old and have been struggling with pain/stiffness/fatigue for almost two years. It started in my knee, with pain/swelling/stiffness. Then it progressed to my hips and shoulders, back, wrists/hands, and feet. At the worst, I was ready for a wheelchair and whimpered every morning with just showering and getting dressed. My rheumatologist started treating me for psoriatic arthritis. I have tried most treatments - NSAIDS, methotrexate, Humira, Enbrel, Remicade, prednisone. Now, I went to a rheumatologist at our university hospital and he thinks that I have PMR. He is struggling with it because I am only 46 years old.

Comment from: ftm, 75 or over Female (Patient) Published: June 25

pain in lumbar, neck, shoulders, all over lethargy. Confirmed by blood test showing a high sed rate.

Comment from: Ken, 65-74 Male (Patient) Published: April 05

It took three months and five doctors to be diagnosed with PMR. I started on 10 mg of prednisone. I found that taking ½ in the morning and ½ in the evening worked best, along with one aspirin in the middle of the day. It's been six months, and I'm down to 6.5 mg a day; and some days I take 6 mgs. I'm trying to get to 5mgs a day. Good food is important, especially lots of veggies. I've always been healthy, but four months before I got PMR, I came down with Bell's palsy. The treatment was also prednisone. Three months later, I was over the Bell's, but a month late, the PMR started. To avoid weight gain, I still eat lots of veggies when hungry and go to the gym four or more times a week. What a weird disease!

Comment from: bardot, 55-64 Female (Patient) Published: February 15

My PMR was diagnosed in late last year. I thought I was going crazy because the NSAIDs were not working or the Tylenol#3 my doctor had prescribed for back pain. When I went to the doctor I was vaguely aware of the condition because I knew an older man who had been diagnosed. Sure enough the CRp and Sed rates were elevated and I immediately responded to the treatment of 20mg Prednisone a day. I felt on top of the condition. My blood sugars were under good control. Then two weeks ago I had a flare up. I don't hear anyone talking about the muscle spasms. My doctor thinks its restless leg syndrome but this is different. The muscles will wake me up curled feet at night to the point I have to get up and walk. I'm still working and I called off today because I could barely walk. I feel frustrated. I think it's time to see a Rheumatologist. I increased my prednisone dose from 9mg to 10mg and I have a call into the doctor to increase it higher for the flare up. I'm a nurse and need to be on my feet all day and can't afford to be off nor do I want to be.

Comment from: Female (Patient) Published: February 01

I have had PMR for about 3 years now. I am going to try and work with my immune system to make it stronger. My intention is to do it by diet. Eating food that strengthens m immune system. I am tired of the side effects of prednisone. I have nothing to lose and much more to gain.

Comment from: 65-74 Female (Patient) Published: September 24

I was diagnosed with PMR about two years ago. I am a 67 year old female. It started with severe pain in my knees and the top part of my legs. I could hardly walk and everyone thought it to be some form of arthritis. It wasn't until my arms started to have excruciating pain that my doctor figured it to be PMR. A blood test was administered and my sed rate was elevated. I was put on 10 mg of Prednisone. I immediately felt relief. I felt like I was 30 all over again. I am now feeling stiff in the same part of my leg. I suspect it is PMR. I understand this thing can go away for some people. I am not that lucky, nor do I think this will happen. I believe that I will always be on some dose of Prednisone for short periods of time.

Comment from: gustywind01, 55-64 Female (Patient) Published: February 28

The Doctor. I listed all my symptoms on paper before seeing a doctor. I was a new patient, having not seen a doctor for 9 years. I was always healthy. When the pain struck I tried home remedies for 4 months since I didn't have insurance. Because friends thought it might be Lyme disease I finally went to see a doctor without much hope I am afraid. He hadn't read half what I had written when he looked at me and said "I know exactly what you have: Poylmyalgia rheumatic!" Still focused on Lyme disease I was doubtful, having never heard of it, but I agreed to some lab work and to start a six day program of Predisone. It was unreal after just 2 pills in the morning and 2 this afternoon, no pain when I attempt to stand from a sitting position. Bless this man! My doctor was right on the spot for me. This is a first in my experience with doctors. After reading Patient Discussions on the web-site I am even more impressed at how quickly he diagnosed this. A+ DOC.

Comment from: terry, 55-64 Male (Patient) Published: December 10

My polymyalgia rheumatic was diagnosed by my physician. The PMR began in march and lasted until November of same year. I slowly weaned myself off of Prednisone. That took courage as the symptoms of pain and withdrawal intensified for several weeks as I discontinued my medication. I swam almost every day as part of my recovery. I took a protocol of vitamins and minerals as part of an adrenal gland support. I'm sure it helped shorten my illness. I wake up with a lot of soreness and fatigue quickly but I am making jumps in my recovery.

Comment from: rubytuesday, 55-64 Female (Patient) Published: August 12

I had a fever of unknown origin for 10 weeks before being diagnosed with polymyalgia rheumatic. The "specialist" for infectious disease thought I was too young (I am 57) and wouldn't start me on the prednisone. I finally went to a rheumatologist near my home who gave me 20 mg. of the steroid. Immediately, the fever disappeared and some of my energy is returning. I had every scan and blood test known to mankind with the same result - nothing is wrong with you. It is great to know that you are healthy but it was quite horrible to be stricken with a fever at any time of the day or night and wondering what is causing it. It is also very frustrating when your doctor (#1 in the field) can't figure it out and refuses to look outside the box. What a crazy illness!

Comment from: anxious, 65-74 Female (Patient) Published: July 07

I have been on prednisone for 7 years, reduced but then back on the tablets. I have GCA. Very healthy until neck ache, eventually told by doctor I was missing my husband who worked abroad. Finally, could not eat as my jaw wouldn't open wide enough and had to poke food into it. My husband flew home and took me to another doctor who diagnosed it immediately by taking a small portion for testing from the artery going to my eye. Still have terrible relapses with Polymyalgia Rheumatica where I can't get out of bed for the pain. Is there anything new out there to help me? I am now a very young 70 but was diagnosed at 63.

Comment from: granny3, 55-64 Female (Patient) Published: May 18

I was diagnosed with PMR 2 years ago. I could hardly move I had so much pain. The pain was mostly in my hips and shoulders. I couldn't lift my arms up over my head. Putting a coat on was almost impossible let alone trying to lift my legs to get pants on. My husband had to help me get dressed. I needed help getting in and out of the car. I went to my primary doctor and she sent me to a rheumatologist. I was lucky enough that I was able to get in right away. He ran the entire normal test for PMR and my levels were all elevated. My rheumatologist put me on 15 mg of prednisone. He had me reduce it by 1 mg every month until I was off it. That didn't last long. Within 2 months I was back on 5 mg. I reduced it by 1 mg every other month. I got down to 1 mg of the prednisone but I started to hurt again. About a month ago my doctor put me on Relefin. With the Relefin and 2 mg of prednisone I can live a normal life.

Comment from: KitCat, 45-54 Female (Patient) Published: January 25

First symptom was mild pain extending in bands over the top of the head from back to front on both sides of center. Second symptom 2 days later was plantar fasciitis, both right and left feet. Suddenly, on day 4, stiffness in the lower buttocks and back of thighs, equally painful on both sides.

Comment from: jflnrse, 45-54 Female (Patient) Published: January 25

I was diagnosed with PMR in October 2010 but not after trying many other things. My family doctor first thought I might have RA so he sent me to a rheumatologist who said I just had bursitis. She sent me for 16 weeks of physical therapy three times a week. The massages helped but soon after stopping PT, I was in horrible pain again. I am a nurse and work on the floor of a hospital so I honestly thought it was all in my head. I went back to my family doctor because he is the one I have faith in. He determined from my symptoms and blood test that it was PMR and started me on Prednisone right away. We have tried to get me off of them once with no luck. In the meantime, I had to have an arthroscopy of my knee so I had to go off the prednisone. I cannot begin to tell you the pain I was in and it was not all from the surgery. I went back to my doctor again. I am on 5mg of prednisone daily. My shoulders are still in a lot of pain. I am going back to the doctor this soon and will discuss this with him to see what he thinks is best. I canceled my appointment with the rheumatologist since I felt she did not find what was going on with me. I thought I could tolerate a lot of pain but this has left me totally weak at times. I am sure we will get it under control soon. They say that most are over 50 when they get diagnosed but I had just turned 50 when I was diagnosed.

Comment from: Raynall, 65-74 Male (Patient) Published: June 20

Two years ago, I started having the symptoms of polymyalgia rheumatic and was diagnosed shortly after. I am now doing much better and it appears it is going to go away.

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