Do I have fibromyalgia?

Hi Becky

This sounds uncannily like me! I am a 64 year old man, although my symptoms have been more recent. Following a lot of stress over the last 3 years, last summer I started getting shoulder pain which worsened into a nasty burning pain across the shoulders and down my arms. The doc treated me with anti d's but it just became worse. I also had the flu-like symptoms and woke up 2 or 3 times a night. Certainly experienced exhaustion.

Blood tests all came back normal, except a further test (Rheumatoid Factor) came back high in December. Doc thought I may have R Arthritis and sent me to Rheumatologist. As there was a long wait I opted for a private consultation. He told me I didn't have RA but had FM. Apparently the RF test was high but at 31 was just above the limit of 20. He would have expected 500 at my age if it was RA.

I have been put on 10mg of Amitriptyline 4 weeks ago , upped to 20mg last week. It has certainly helped sleep and taken the edge off the pain. No longer have burning pain just shoulder and arm ache. Too early for the 20mg dose to have effect yet, apart from sleep.

Rheumy ordered two extra blood tests, ANA and anti-CCP, also an MRI bone density scan, but he expects nothing will show up. So blood tests etc are just a means to rule out things other than Fibro.

Hope this helps

take care

Chris

Thank you Chris. I think I might give the doctor another try then. I feel that if I don't get some sort of treatment I'm going to become worse and very exhausted which I can't afford as I run my own business. Thanks very much for sharing all your information and I hope you feel better soon.

Becky

Yes, better to have it confirmed if possible. There are a range of helps. Apparently CBT is helpful, I haven;t tried that yet, but any port in a storm!

Amit is worth a try, but be aware it could zonk you out for a few days until you get used to it, especially as you say you work full time. I have to take it by 8pm else a little drowsy until about 10 am or so. But it does pass.

good luck

Chris

HI there, Ive had fibromyalgia for quite a few years alongside polyarthritis and thyroid disease, ie all auto immune things. Have you been tried on Pregabilin? Not all areas prescribe it, bit of a postcode lottery but I think it helps me a little and I have just upped the dose as Im going cold turkey on the ibuprofen. It was the hospital in London that prescribed me, the drug was quite new in use over in the UK then (2008 i think). I was on amytrip. for a while but it just made me too drowsy in the am when i had to get up for work!

Im the same age as you and I think menopause makes some of the symptoms worse. I do think the pregabilin helps the sleep a bit, it seems to calm that manic part of the brain which is common in fibro. I also get jaw and face pain upper and lower back pain and strange pins and needles and a sensation of energy trying to rush down my arms sometimes from my upper back. The thing about fibro is its so different for everyone.

With doctors these days you really do have to keep pushing for them to send you places and do tests, but that's your right so go for it! All the best, Val

Thank you.

Well I've seen the Doctor today and had some tests done so I await the results now. I asked him if, given all my symtoms, he thought it could be fibro but he wouldn't say. He was very thorough and sent me for a long list of tests so I'm guessing he wants to eliminate anything else first.

After telling him what I've been through he did agree that I would be bound to suffer from some sort of stress related illness now and that fibro can be triggered by stress.

I must say it's very nice to be able to chat to other people who have similar symptoms as I've never actually met anyone who had these and had really wondered if in fact (as my ex husband kept insisting) that it was all in my head!

Hi Becky. I'm glad yr doctor is being thorough. Be assured fibro is not in your head. It's a hard one to diagnose and can certainly be triggered by stress. But it's real, quite similar to Cfs. It's querky the way it can manifest and the symptoms are sometimes strange. Perhaps one of the hardest things is how it affects your sensitivity to pain ie something will hurt far more even a bruise than for a "normal" person. Good luck and keep me posted. V

Hi Becky and vjl

Thanks for your comments, vjl. Pregabalin appears to be next on the list for me if amit which was upped to 20mg last week does not work. It's causing me concern at the moment because my tinnitus level has increased and I am getting headaches which I've not had before the last week. So must wait and see, but amit has helped sleep somewhat.

Becky - good to hear you've been to the doctor and are having tests. You're so right - they need to do tests to eliminate other things. With me they had to check it wasn't polymyalgia rheumatica or R arthritis, for example. In one way it's disappointing when you get told all your tests are Ok, because everyone wants a result which can be sorted by taking a pill! But at least you will have an answer which you can work on.

take care both of you

Chris

Hi Chris. Of course you need to see if the Amit works. Sorry to hear re the headaches. Do you think they're linked to the tinnitus. Did you' know there are many forms of tinnitus, I've been doing some research on line as I have the kind where I can hear my heart beat and or blood rushing almost like having a tumble dryer going round in my ears and head. I think it's Pulsatile tinnitus! I've also been getting headaches strange eh? Not really been a headache person in a long while!

Becky - I hope your tests are back soon and throw light on it for you. Don't give up if you get negatives. It wasn't til I got to see a consultant recommended by someone who knew me and my symptoms I finally got recognised as it were. It helps such a lot doesn't it when someone understands what your talking about!!?

Having auto immune things is v stressful as tests don't always give answers and there's always the risk of someone making out it's not real. cBT may help you learn to deal with the condition but it's not a magic solution. I work in that profession!

Good luck to you both and keep posting.

Well the Doctor has phoned to tell me all my test results are normal.

Although I'm happy to hear that, on the other hand I had hoped they would find whatever is causing this strange illness.

He said that since the inflammation markers are not above average this would mean that fibro is not necessarily the cause and he has put my symptoms down to "stress exhaustion" .........so I'm still at a loss.

I will however, follow the advice given for fibro sufferers and start to treat the symtoms which is what the doctor has advised anyway.

I would have loved to have a name for my illness -don't know why, maybe just to let my ex know that it's not all in my head!

Well whatever it is Becky stress exhaustion fibro or something else, you can feel it. Symptoms caused by stress are real. Your ex has his own reasons for telling you it's in your head which we will never know but that doesn't have to be your truth. Keep strong and look after you now. All the best. V

HI Becky and peeps,

I know how even just having a name for your illness can help you justify your symptoms and hopefully move on.It took me 4 years of various tests and doctors etc to finally get diagnosed with fibromyalgia and chronic fatigue syndrome. As the peeps have said, its a diagnosis of elimination. Practically all my test results came back normal too. Now I'm having Graded Exercise Therapy (GET) which is helping. Stress is definitely a factor, so perhaps instead of chasing a diagnosis which in itself is stressful (I know!), focus more on what your symptoms are and how best to manage them day to day. CBT I have heard can be effective, as can fiding time in the day, (even 5 minutes) to do some relaxation, meditation, focusing on your breathing etc. I am busy, working mother of 2 and never used to have time.....but you learn that you need to make time for yourself as you owe yourself that. It will help to make a happier you and so hopefully happier hubby! JK

HI JK yes I agree with you re the finding time in the day, breathing is important and when we are stressed we dont breathe properly. GET sounds interesting, I will look into that. My exercise is walking as its about all i can do and swimming but we dont have a nearby pool. I dog walk in beautiful countryside so I try and stop and take in just how lovely it all is. Mindfulness is becoming popular to help with things like fibro, stress, anxiety and depression, check it out if you are interested. In some areas in London you can be referred to a mindfulness group. Doctors are so overstretched time wise and financially you have to push and make a noise if you want something, Im learning this! Good luck all VJL

Thanks for all the replies. I'm going to take the advice and try to live a more stress-free life - where possible. I know that's what's caused this.

The Doctor I saw was very thorough and sympathetic but I don't think he knows much about this particular type of illness and would probably prefer a patient who has an illness with a label that he can then treat in the routine way with prescribed drugs. He was at a loss to tell me what is wrong with me now that the test results show everything is normal.

I felt a bit sorry for him so just laughed it off.

But I know my own body and I know something's not right. Looks like I'll have to figure it out for myself after all.

If your doctor was at a loss, it would have been helpful if he could have referred you onto to someone who may be more familiar with your symptoms. Do you have a pain specialist/clinic in your area? Or a complimentary route may be a naturopath? They will look more into your general lifestyle and nutritional habits that may make a difference, as some foods can cause inflammatory responses in the body. Or perhaps a gentle yoga that also has meditation as a part of it. I find going to a class kinda gives me permission to relax as I'm just doing what I'm told to do! You can then take those skills and use them at home.

VJ...Sounds like you live in a lovely area. I cant swim unfortunately as I'm a rubbish swimmer and I find the cold water makes my muscle pain and tightness worse....however, through the GET I'm walking 4 to 5 mins every day (on top of a busy schedule) with the aim of gradually increasing this each week.

Mindfulness does sound interesting...I'll look into this a bit more JK