New here, not sure what I have

[bradjensen68]

Hello! This is my first post here and I am wondering whether I might have PMR GCA and am looking for advice. I am an American living in Germany at the moment, but have found no support groups here yet, so please excuse me if I "crash" yours.

I have been suffering from debilitating fatigue for the last 10 years or so and have been to see just about every doctor that you can imagine and have numbers of diagnosis and treatments, none of which have helped a whole lot. Although, to be fair, I went from being unable to work and barely able to take care of myself to being employed and moderately (barely) functional but I am not sure that any one treatment has helped or if I just got a little better on my own. I have the diagnosis of "Chronic Fatigue" which really doesn't help much. I also have muscle pain (in my shoulders and lower back, particularly after sleeping. Have trouble getting up off the floor, etc.) which I chalked up to aging, but I am "only" 48 and others in my age group do not have these problems. I have also had vision problems including halos and decreased vision over the same period. For a time, I suffered migraines - but do not now.

So why am I here? Well, I read that one indication of PMR is a high ESR and CRP blood test. I have had high results going back at least to 2007 and no doctor was able to tell me why. The results have been pretty consistent over the last 9 years or so.

What might be an indication that I don't have PMR? Well, I am male and under 50. Also, can one have a slow-developing PMR over 10 years? Can the effects of PMR change (get better) on their own? At one time, the fatigue, migraines, vision problems, etc. were much worse than they are now.

I am exhausted (no pun intended) by the idea of going to see yet another doctor and having yet another diagnosis that doesn't pan out and the medication sounds a bit scary. I don't know if I should just try it and "see what happens". So I am looking for a little encouragement (or discouragement if that is called for).

Thanks and look forward to your reponse.

Brad

[SheffieldJane]

Hi Brad and welcome to a club that you never wanted to join! You'll find a lot of knowledgeable and kind people on this forum. I can see how your shifting symptom picture makes a firm diagnosis difficult.

I have been feeling pretty rotten for so many years that I tend to minimise the time span of it when telling people. I cared for my mother with dementia for 7 years and had other stressors at the same time and put it down to that and depression ( mild enough to function, strong enough not to want to). The PMR came on quite dramatically some time after my mum died. I had a severe virus type illness, and was left with sharp pains, stiffness and lack of mobility. Eventually I was prescribed Prednisolone and within 48 hours I was pain free and felt better than I had for years, the low mood lifted too, that had been the bane of my existence. I was on a marvellous high for about 6 weeks. Prednisolone is a wonderful/ terrible drug in that it is amazingly effective for PMR but before long some users begin to experience nasty side effects. It clinched my diagnosis though and for that and the honeymoon period I will be forever grateful. The side effects can include, being short tempered, weight gain, swollen round face and neck, high blood pressure, insomnia, I could go on....

I recently saw a Rheumatologist and he confirmed the Polymyalgia Rheumatica he also gave me a Fibromyalgia diagnosis, this explained symptoms that didn't quite fit and the length of time I'd been struggling and having every test known to man. I am now gradually reducing my Prednisolone dose and am on 12.5 mgs ( from 20 mgs). I was diagnosed in March this year and was told I'd been on too much for too long. Would I take Prednisolone again, hell yes! And I have all of the above side effects.

You are young to have a PMR diagnosis but not the youngest to be on this forum. You may have it alongside something like Fibromyalgia. The clincher is your response to Prednisolone. It can be a dangerous disease particularly if it leads to Giant Cell Arteritis that puts your eyesight at risk.

I didn't mean this to be so long but you do remind me of where I used to be. In my view you are too young to accept limitations and put it down to ageing. Getting fit and mobile should be an option for you.

Gird your loins and explore this avenue. Let us know how you get on. Best wishes. Jane

[Runrig01]

Hi Brad, your muscular pains and symptoms sound very like a Spondylarthropathy to me. It is more common in young men, develops slowly over years. Notoriously have problems getting up from lying on back, and worse at night when you stiffen up. If you get up and walk around in the night does the pain ease. Generally with spondyloarthropathy, which is an inflammatory arthritis of the spine, the pain improves with exercise and is worsened by rest. It takes years to generally get a diagnosis 8-10 yrs is common, because nothing shows on X-rays initially. If you get an X-ray of your sacro-iliac joint and it shows inflammation, then that is more or less confirmation if a spondyloarthropathy. You can also get an MRI but it needs to be the right views to show inflammation. I should also mention it can affect other joints too, so not just back pain. If you think this sounds like a possibility I would get a referral to a centre that specialised in Spondylarthropathies. Good luck

[bradjensen68 in reply to Runrig01]

Thanks! I will have to check my records. I know that I had an MRI for my spine at one point and they were not able to find anything although I don't remember the specific condition that they were looking for. My doctor told me that my spine "looked like a bamboo stalk" and he would not treat me (a chiropractor) because my spine was too bad. No real diagnosis, just told me to get more exercise. When I do find a chiropractor willing to treat me, it does help.

In general, exercise tends to wear me out. Even moderate exercise will mean one or two full days of worsening symptoms of fatigue. Since I now am finally able to work, I cannot afford to be that bad for two full days, so I avoid exercise.

[Runrig01 in reply to bradjensen68]

Not sure if you are already aware that the term "bamboo spine", is used to describe ankylosing spondylitis, one of the arthropathies. I would bevcateful about using chiropractic therapies, if you do have a Spondylarthropathy more damage could be done. Take care, if exercising swimming and walking are 2 if the best exercises, and gentle stretches

[bradjensen68 in reply to Runrig01]

No, I am hearing this for the first time. It sounds like both conditions (PMR/spondylitis) could be related to rheumatology, so I think I need to find a good doctor. I have never been to a rheumatologist - just about every other type of doctor!

[Runrig01 in reply to bradjensen68]

You ideally need a Rheumatologist who specialises in Spondylarthropathy. Here in the U.K we have centres of excellence, do your homework. You can even email these rheumy with your summary, most will agree to assess you if your GP sends a referral. Then you can approach GP with a name, who has in principle agreed to give an opinion. Good luck 😃

[PMRpro Ambassador in reply to bradjensen68]

Spondyloarthropy can present looking very like PMR - I had a rheumy who was determined to make it that until he found no supporting evidence! However, I do know that Keyes on the VasculitisUK forum on this site

healthunlocked.com/user/keyes

was initially diagnosed with PMR but was sure it wasn't - and eventually, after a lot of investigation a diagnosis of ankylosing spondylitis with a Behcet's crossover was made (very rare!). I think she is pretty clued up on it as a result so I'd suggest you contact her.

Yes, you are quite right - whichever it is, the speciality you need is rheumatology. Where in Germany are you? The system there does allow for a fair choice of referrals but they don't always seem to be terribly good at PMR, judging by my friend who lives in Soest and was sent to a Kur where they sent her home worse than when she arrived there! They seemed to think that heavy duty exercise was the way to drive it out. Shame you aren't in Austria - now there I can suggest a good name.

And don't worry about crashing this forum - there are 3 PMRGCA forums based in the UK and all have a very international membership because they are about the only ones!

[bradjensen68 in reply to PMRpro]

I am in Southern Bavaria near the Chiemsee. It looks like Munich would be where I would need to go.

[PMRpro Ambassador in reply to Runrig01]

Often chiropractors in Germany are fully medically qualified orthopaedic specialists - mine was wonderful! It is a very different experience going to one there, believe me.

[bradjensen68 in reply to PMRpro]

Mine was also a medical doctor, but I had a bad experience. He just seemed interested in throughput and was borderline insulting.

[PMRpro Ambassador in reply to bradjensen68]

I did my homework with other doctors before choosing mine. A GP friend said she'd trust him with her back - and that was good enough for me!

One of the old school Teutonic doctors eh - I'll prove how clever I am by being rude...