Does it sound like I have fibromyalgi... - Fibromyalgia Acti...

Fibromyalgia Action UK

49,522 members60,705 posts

Does it sound like I have fibromyalgia? How do I get diagnosed?


Hi I've had a bad pain that in my shoulder blade about three years ago. It was made worse on movement that calmed down when I stopped moving. It gradually went away by itself but last year it came back with a vengeance and is gradually getting worse. Now when I tell my neck to the left I get a sharp pain in my shoulder blade. My neck hurts pretty much constantly. My breastbone and shoulders hurt too. My ribs and sternum at the front are painful to the touch. When I do any kind of activity that involves my arms, the pain builds up and becomes unbearable. I wake up really stiff and in pain every day and i loosen up after about 3hours. No painkillers enable me to still work through this pain and the only thing that helps is actually to stop moving. I have seen a physio who has no idea what it could be. An Orthopaedic doctor suggested it could be fibromyalgia. I saw an osteopath who after four sessions said that they could no longer treat me as they suspected I had Tietzes Syndrome, and a Doctor at the Pain Clinic suggested I was stressed and my nerves were firing off signals all over the place. The only test I've had is an X Ray and that showed that my the curve in my Cervical Spine had been reversed in keeping with muscle spasm. The pain has become unbearable and it is seriously affecting my quality of life. I had to quit a college course and I am off sick after starting a new job only a week ago. I'm not sure what to do, or where to go next. Can anyone help?

11 Replies

Hi ninjacat, I am so sorry that you are having such a rough time at the moment. From what you have said, I would think that a diagnosis of fibro might well be the case, but I would ask your GP for referral to a rheumatologist who probably is more clued up about fibro. He /she might well be able to do the trigger point test in which pressure is applied to 18 "trigger points" and if you react to more than 11 then a diagnosis of fibro can be given with confidence.

It is such a frustrating time when you are waiting for your proper diagnosis. I ended up waiting over 35 years before I got mine having been told I had fibrositis, which is what fibro was known as........ When I eventually got the proper diagnosis I can't tell you how relieved I was as I thought I was nearly going mad, with the pain, exhaustion, and memory problems.

I sincerely hope you manage to get a proper diagnosis very soon, and am sending lots of positive healing vibes your way :-)

Foggy x

Thank you so much for your, reply I really appreciate it. The Orthapaedic has actually referred me to a rheumatologist so I just have to wait for that. When I suggested that I'd been told that I have fibromyalgia to the doctor at the Pain Clinic, she pretty much just laughed at me and suggested I'd just hurt myself.

Also, can people either work or get benefits with fibromyalgia? I'm so lost and have nobody to talk to. Sorry about all the questions x

No problem, you have to ask to get answers don't you :-) Your question about work and benefits I'm afraid is not an easy one to answer. Just by having the diagnosis of fibro,doesn't necessarily entitle you to benefits neither does neessarily preclude you from working, it all depends really on how badly it impacts on you.

I'm sorry you had such a reaction at your Pain Clinic, it just shows the lack of knowledge in some people and their lack of empathy to respond like that.

Hopefully, here you will be much more understood and given the support you need.

Don't hesitate to ask more questions, that's what we are here to help you with :-)

Foggy x

Thank you for the help Foggy. I'm guessing it'll be a long time before I have any diagnosis. Hopefully by them I'll find a job that I can physically do. Or even painkillers that help me work through the pain. X


Hi Ninjacat :)

Sorry to hear you're in so much pain and discomfort.

Welcome to the forum this is the right place to come for information about Fibromyalgia. I cannot tell you whether you have it or not as I'm not a medical professional but can give you some links to check out so that you can check your symptoms etc and go informed to your GP to discuss the possibility of it :)

Get a diary and start making notes about your health in it for reference and to log any symptom changes like them getting better or worse. Write down all of your sympoms for comparison and check off the ones that you have.

This link is to our FAQ- I have symptoms of Fibro, how is it diagnosed?

This link takes you to the 'About Fibro' section of our mothersite where you will also find lots of other useful sections including one regarding benefits.

Link to the 'Benefits and Fibro' section of our mother site :)

Please ask away as someone is always listening and will be along to answer you :)

Hope these links are useful for you and good luck on your journey for diagnosis and please let us know how it goes :)

:) xxxsianxxx :)

Ninjacat71 in reply to Hidden

Thank you so much for your help Sian. I'll do more research and all this is very useful. Thank you. X

Hidden in reply to Ninjacat71

You are most welcome :)

Any Q's please ask away one of us will be along to try and help :)

xxx sian

I was at the Bath 'Min' yesterday as I had an appointment with the specialist CFS person. I have had a chronic muscle spasm in the same area as yours for several weeks and my doctor suggested I see an osteopath, I've been to one session so far. The expense has always put me off but I was in agony. The session helped a great deal. As I already take 'gabapentin' & 12hr tramadol there didn't seem much more could be done - I'm a lot freer of the spasm but will be going along next week again.

When I was in with the CFS specialist I mentioned not only the spasms but other significant issues that I've been curious as to there being 'fibromyalgia'.

She explained that if it still continues to ask for a referral from my GP to attend the Rheumatics clinic who can test for fibromyalgia. I was very happy to hear this because much of the discussions on the net have never suggested I could do this. I hope this helps

Ninjacat71 in reply to rodee

It's great the osteopath helped you. Initially he helped me, especially with releasing tension in the neck, but other than that the long term pain is still about. I'm going to keep a diary as Sian suggested, but I think I'm going to push for more tests as other than an x ray I've had nothing. Let me know how the osteopath works out.

rodee in reply to Ninjacat71

well, like I said don't forget you are able to be referred for testing. the rheumatics hospital will also help with mentoring with DWP

Hi there I am very similar to yourself I have curve of the spine (scoliosis) pains in most of the trigger points I am about to have my first appointment at the pain clinic on Friday as no one else knows what's wrong grr. I've been waiting 5 months for the appointment and my gp has been home visiting me fortnightly since July 2013 !. I am on 32 tablets including tramadol 200mg, and 50mg , disazapam, amitropiline paracetamol lustral gabapentin zomorph totalling 3100mg give or take in each 24 hours and 80ml oramorph I am still unable to have a life if I go out for an hour in my wheelchair ( as my right leg drags and has no bear weight) if I go out an hour I sleep the next 24 hours on and off and it's not the medication at first I was a zombie now I am not affected by the doses. I have to also use crutches and I have been waiting since December for atos to come and assess me at home. I have had my whole house adapted ramp, step, grab rails I could go on and I've probably depressed everyone but I wanted you to know your not alone and also if there is anyone out there who has anything similar to me I am terrified of what they will do to me on Friday I'm booked in for 9.30am but I will have to get up at 5 am to begin my regime of medication just to get out if bed I just want to be told there will be an end to this as I know I surely cannot remain like this I am only 38 we just need to have faith in the doctors and hope we get sorted good luck to you message me anytime xx Nicola x

You may also like...