PMR and FIBROMYALGIA

sorry only have pmr but i am sure others will help carolk

Hello Ascotlady. Yes, diagnosed July 2010 with Fibro, already have PMR and GCA. Being managed fairly comfortably now.

Catie

I was diagnosed with polymyalgia in 2008 and was on steroids for three years. Last year I was then diagnosed with fibromyalgia based on the tender spots. To be honest at present it is unclear as to whether I have both PMR and FMR or just fibromyalgia. All I do know is that I am in an awful lot of pain at present. I also have been diagnosed with underactive thyroid, low calcium, Osteoarthritis and borderline kidney function.

Christine

What a blow to be in such pain again, especially after having only quite recently beaten PMR.

PMR and Fibromyalgia pain can seem very similar, and I became convinced that I also had Fibro at one stage of my journey with PMR and GCA, when I suddenly developed quite different painful points such as down the front of my shins. The problem recurred several times and then just disappeared for good.

I'm assuming that if you are someone who has experienced raised blood test markers with PMR, then you will have had your CRP and ESR blood tests repeated. Raised markers could point to a return of PMR.

Like you, I also have osteoarthritis and reduced kidney function, and although I am off steroids now, I was generally able to distinguish between what was osteo pain and what was PMR pain. However, one complication for me was having spondylolisthesis (a slipped verterbra) and I did used to find difficulty in differentiating between the two.

I assume you are undergoing treatment for your thyroid and low calcium but wonder whether you have had your Vitamin D levels checked. A deficiency of the latter can lead to painful muscles.

I do hope you have a good GP who will get to the bottom of your pain, treat you accordingly so that you start to feel much better and soon.

I do have blood tests taken frequently and for a while now my ESR result has been much higher than my normal level. My last blood test was last week and the ESR level was 30 which was down on the previous one which was 38. This in itself does suggest the possibility of PMR and my GP has hinted at this. My previous medical history does also include multiple gallstones as well as having had a double heart bypass.

Yes I am being treated for the thyroid and calcium and I am very lucky to have a good doctor who at present I see every couple of weeks following a scare a few weeks back when my calcium suddenly dropped to 1.47 from 2.1. I was alerted by out of hours doctor when the hospital pathology department had contacted them to make sure I was ok with such a low calcium level. My Vit D level is also checked regularly.

I too hope that the pain levels decrease soon and that there are more answers to what is going on with with me.

Thanks for all your replies. I was at the hospital yesterday seeing my rhuemy doctor, she wants me to have a mri scan to see if theres anything else going on in my body, cause i'm in so much pain. also wants me to get off the steriods so put me down to 5mg aday from 7 and half. don;t know if any of you have got any muscle lumps , i've got one on side of my neck which i've had a scan on, but now i have another on my throat.so having a scan on that one aswell. she also said i have sciatica so sending me for physio, Can i ask what treatment any of you have for your fibromyalgia, sorry if i have waffled a bit.

Hi ascotlady - at present I go to acupuncture sessions which do seem to ease the pain to a certain degree. As I am on a lot of medication anyway I am reluctant to take any more. My acupuncturist is familiar with fibromyalgia and in fact the way he describes this illness is as a blockage in the meridians.

All the best with the scan and I do hope things get sorted for you and that your pain begins to reduce.

Hi Ascotlady - I'm a bit stumped as to know quite where to start. Firstly, if your rheumatologist has dropped your steroid dose from 7.5 to 5mg in one go, then I would suspect that some of the pain you are having is withdrawal symptoms and nothing to do with either PMR or Fibro. It is a very big drop and could very well lead to its own problems.

I agree so much that Fibro is a very painful condition, but maybe having had PMR first with it's muscle pain and stiffness made me more aware of a 'different' kind of pain. I was diagnosed quickly and am being treated with small doses of amytriptyline and gaberpentin, which have made a world of difference to me.

Not quite sure what you mean by muscle lumps? I have/had a number of muscle knots which I treat as trigger points with acupressure and occasionally massage. Mostly in my neck, shoulders and lower back and I find heat treatment is very good - I've tried wheat bags but there is nothing like my good old hot water bottles!

I have previously had acupuncture sessions on my back and neck for PMR and that worked very well for me. Would like some more, but where I am living now it seems such things are in short supply.

I do hope you find some answers to your problems. Do please keep in touch and let us know how it all goes.

Catie (Nefret)

ascotlady

Just a thought: when you refer to "muscle lumps" I wondered if you were referring to the glands of your neck being swollen? I had persistent swollen neck glands a couple of years ago following a severe throat infection, and following a CT scan it was believed I had Lymphoma. However, a subsequent MRI scan ruled out Lymphoma and I was diagnosed with Sjogren's Syndrome, another auto immune disease. I sought a private appointment with a rheumatologist which finally led to a diagnosis of Mickulitz's Syndrome (close relative of Sjogren's). Many months down the line the swellings reduced and now just come and go occasionally.

Good luck with the scan results and do keep in touch and let us know how you get on.

I have had PMR for about two years and am now being investigated for fibromyalgia which I am finding very painful and annoying. I am hoping that 'things' will improve when I find the right foods etc to help me?

Hi Grannie Annie

I'm sorry to hear that there is a possibility that you may now Fibromyalgia - as if PMR isn't enough to contend with. At one stage of my PMR I also thought I may have Fibromyalgia as my shins in particular were so painful to the touch. A lady who runs the PMR East Anglia support group, together with a member of the Fibromyalgia Association, produced a paper in 2011 giving a comparison between PMR and Fibromyalgia. It sets out the varying symptoms for both and, if you are interested, you may be able to find it by Googling the PMR East Anglia Support Group or by contacting the Fibromyalgia Association direct.

With regard to "the right foods", following diagnosis, I ate as many anti inflammatory foods as I could. These included oily fish several times a week, beetroot, avocado, garlic and turmeric. I inclujded lots of steamed veggies and lots of fruit. I avoided processed meats, sugar and coffee. Not by any means a cure for this illness (unfortunately there is no cure at present) but I believed that they reduced my pain - if I veered off the oily fish in particular, I would notice a difference.

Hi Grannie Annie,

I'm also sorry to hear you might have fibromyalgia as well as PMR - initially it was a toss up between one and the other for me as there are several common factors. The biggest difference though is that PMR responds to pred, fibro definitely doesn't! Fibro often responds to amitryptiline - which most people know as an antidepressant and get very upset about trying as a result. It isn't the doctor saying it's all in your mind - it is using another thing it does to deal with the pain.

However - another possible confusing diagnosis is something called myofascial pain syndrome which also has commonalities with fibro and PMR. It appears as foci of inflammation which can be felt as knots in muscle in specific places but the pain from them is referred into other parts of the body. The knots can be dealt with by a physiotherapist or good massage therapist and that will relieve the pain a lot. Sometimes the pain is masked at higher doses of pred as it is enough to deal with the inflammation points but as the dose is reduced the pain comes back.

Eileen

Thanks for all your replies. I was at the physio 2 weeks ago and they gave me some gently exercises to do at home and a walking stick, i couldn't do the evercises because i'min so much pain, went back today and was given 2 sticks to use. I had my bone scanlast week and having scan on my throat next week where the lump is, but still waitng to hear about my mri. the physio said she would try and get my rhuemy appt brought forward if she can, she thinks i'm having a bad flare up with the firbromyalgiaalso said to get a kenalog injection to see if it will help..I wonder some times will i ever get better. the pains are all over my body, nothing seems to ease the pain. i've got occupational therapist coming to see me as i have problems getting on and off toilet, shower stool bed and chair, can't stand in kitchen to cook or washup etc sit on my shower stool at the moment . i'm getting very down and keep bursting in to tears, feeling sorry for myself, i know there is a lot of people out there worse than me, so i should be grateful.

Hope your all doing ok and not suffering to much x

Hi rita12

I'm assuming that you are the same person who posted under the name ascotlady a few weeks ago?

I'm sorry to hear that you are suffering so, and when you refer to the difficulties you are experiencing in "getting on and off toilet, showr stool bed and ", that is so reminiscent of all my experiences when first diagnosed with Polymyalgia. If all your pain is being caused by a flare in PMR, then your recent reduction from 7.5 to 5mg of steroids will not have helped. As this low dose, we should never reduce by more than 1mg at a time and some of us reduce by just half a mg. If it is a flare, then you really need to increase the steroids back up to a higher dose.

When you were first diagnosed with PMR, did you have raised blood test markers (ESR and CRP)? If so, have these tests been repeated? Also did the steroid starting dose relieve most of your pain initially. If they did, then I'm wondering if the steroids have been reduced too quickly.

I'm so sorry to read how down you are feeling but it is not surprising when you are in such pain and I do hope you will soon get the right diagnosis and the correct treatment to make you better.

In which part of the country do you live? I ask because there might be a support group in your area, in which case it could help if you have contact with other sufferers.

Do keep in touch and let us know how you are.

Like MrsO , I can recognise the description you give - it sounds as I was for nearly 6 months before being allowed to take pred.

Like her, I also feel it is hardly surprising you are in such pain after a reduction from 7.5mg to 5mg - and, frankly, it should suggest to your rheumy that it isn't fibromyalgia alone that you have since fibro doesn't respond at all to pred. It is possible to have both - and to muddy the water there is also something called myofascial pain syndrome which also has trigger points, which leads to referred pain in various places and mimics both fibro and PMR. It has recently been shown in research by a German orthopaedic specialist (unfortunately not yet published so I can't provide a reference) that the trigger points, which can be identified as points of severe pain when touched and also as knots in muscle in several specific places (shoulders, base of neck, along the line of the spine, lower back and thighs in particular), are accumulations of cytokines, which are causes of inflammation. They are often found alongside fibro and PMR.

I had problems with this, identified by the local hospital anaesthetist who runs the pain clinic and treated by both her and the physio. There are still sore points but nothing like they were and I can now walk!!! This ISN'T any form of complementary/alternative medicine, it is mainstream public system therapies.

Ask the physio - exercise alone won't cut the mustard, it needs hands on treatments. And query WHY the rheumy thinks it's fibro.

Eileen