Hi to you all, I am new to this site and as yet do not have diagnoses my question is can anyone tell me who diagnosed their condition, I am waiting to see a neurologist spinal specialist as my doctor has drawn a blank. I feel like my life has spiralled out of control and the quality of my life is at rock bottom. I would appreciate any feedback please.
Thanks in advance
Shan
Hi the rheumatologist diagnosed mine a while ago. My life has changed greatly, I don't work or drive. I also get exhausted and jelly legs but I cope. You have to pace yourself each day. Good luck in getting your diagnosis.
Yes A Rheumatologist usually diagnoses fibro if your Doctor doesn’t, I agree pacing is the only answer as there’s no cure
Thank you, it looks like my doctor may have referred me to the wrong department, I’ll just have to hope for some kind of resolve.
Hi Iv had systems over 15 years and at first dr thought ms but been for scans and now there saying fibro but I’m struggling to work as I’m self employed , my husband works but as I’m only 59 I need to work as his money does not cover everything , Iv got no private pension I do have some saveings , but when you stopped working did u get any help with money from benifits as it’s so painful to work
Hi, I had to stop working in November last year we don’t have any private health insurance and we are living off our savings, we get no financial help it’s a stressful struggle.
Hi Groundhog have you applied for pip
No Iv not applied for anything yet as I’m working 3 days as cut down from 5 but really struggling still
You can still claim for pip even if your working , I don't work and only get the care component hink it's £340 a month , but if you qualify for the mobility component it's alot more worth you looking into it
Hi.. My doctor also referred me to a Neurologist. I initially had a long phone appointment with him due to the pandemic. He sent me for a MRI & lots of blood tests. To get the results I saw a Consultant Neurologist at the hospital, she diagnosed Fibromyalgia among other things, she was understanding and very supportive.In her letter to my Doctor she suggested I also saw a Rheumatologist, this I did 4 weeks ago. He again diagnosed Fibromyalgia, but sadly wasn’t supportive and didn’t really seem to believe in it. I was just given a little booklet and discharged. Finally getting a diagnosis though has really helped me, I feel like I can start to find a way to move forward now. I hope you get your diagnosis soon, it’s a difficult journey i know, but you will get there. Sending you strength and good wishes x
Thank you, your comments are very helpful I am having to pay to see the neurologist as nhs unable to help until late summer, fingers crossed I can afford to get to any diagnosis.
Wishing you all the best.
Rheumatologist only diagnose they don’t treat fibro they treat inflammatory and rheumatic disease’s.so most people are signed off to gp that’s just standard not because there not interested in you just they don’t deal with fibromyalgia only diagnose
Hi.. In response to your message… I went to see the Rheumatologist expecting a diagnosis, I already knew that I would be referred back to my Doctor for any treatment. What I didn’t expect was his attitude, he made it clear that he didn’t believe in it, he didn’t answer any questions and was patronising and dismissive. He also diagnosed Osteoarthritis in my hands, he was far more interested in this, but still didn’t offer me any advice or help when I talked about how painful my hands are. It was a bad experience, but now I have a diagnosis, not only from him, I can begin to move forward. On reading other messages on here it seems that it is a problem and there clearly is a need for all medical professionals to be better informed about Fibromyalgia. My experience has been mixed, the Neurologist I saw was really understanding and supportive. Please excuse my ramble, but I’m struggling to come to terms with this horrible illness and how much my life has changed, and your response made me feel quite defensive.
Ok if you feel he failed in his or hers duty by being dismissive report him they don’t deal with fibro or osteoarthritis so your best place for information is probably your gp or support group like ..didn’t mean to make you defensive and don’t understand why you would be my comment wasn’t to cause you upset .. they just deal with other things that’s all not that they aren’t interested it’s just not there speciality
I don't think any of us can speak about the attitudes of all rheumatologists, how can we know who believe in fibro or not, who are sympathetic but ineffective or great? We're all human there are plenty of horrible medical people out there and plenty of good ones. I have experienced both. Surely Collager's experience is valid, they had a bad experience why be an apologist for a rheumatologist you've never met?
I’m not being an apologist for a rheumatologist 🤔 whatever that means but if she feels she been dismissed or treated badly or unfairly then she can make a complaint
If you don't know what it means how can you know you're not being it?
Plus I don't think PALS take doctors being dismissive very seriously, and if you're struggling with illness the last thing most of us want is to go through a complaints procedure that just prolongs the distress and doesn't do much to bring lasting change in the attitudes of doctors.
Hi Cat.. I completely agree with all that you are saying. I decided not to make a complaint about this person because I knew what it would involve and I feel that I’m fighting enough battles at the moment. As I did say I had a good experience with the Neurologist I saw, so I just put this one down as a bad experience and tried to move on. I feel that it’s important to share experiences on here though, be they good or bad and that was all I was doing, to help someone else. When I joined only 5 days ago, it helped me a lot to realise other people were struggling too, that I wasn’t alone. I’m sorry this interaction became unpleasant, I did look on this site last night and I can now see that a name has been hidden & a certain message deleted. I can’t claim to understand what that was all about, but I hope that all people whoever they are, that are struggling with this awful illness get the help, understanding & support that they really need. Backing off from this site now for a while, it’s an excellent site, but as I said I’m fighting enough battles at the moment. Take care and be strong x x
I hope you can mend a bit now. Exchanges on this forum are rarely so toxic I assure you!
The forum is full of sympathetic people with often a shared difficult experience of the medical world. Most often people are really helpful particularly for their huge wealth of combined knowledge of medications, drug interactions and what may or may not be yet another symptom of fibromyalgia.
Good luck!
I was diagnosed in the pain clinic after suffering for 25 years and gp telling me it was all in my head .
Hi Shanjg,
Healthcare appointments can be a stressful and frustrating time. To best prepare for your GP appointment and make sure to ask all the questions you want to, check out our online leaflet on managing your healthcare appointments here: painconcern.org.uk/product/... or Self-Management Navigator Tool: painconcern.org.uk/the-navi....
I'd also like you to signpost you to our leaflet on managing chronic pain: painconcern.org.uk/product/.... This will give you advice on how best to understand and manage your pain. It is a great starting place when you begin navigating our resources.
It sounds like you are going through a really difficult time at the moment with the pain you are expereincing and this can often lead to overwhelming emotions. I would like to signpost you to one of our leaflets on managin emotions with chronic pain which should hopefully give you some helpful advice: painconcern.org.uk/product/....
If you feel that your thoughts are becoming more persistent and overwhelming, the
best people to talk would be:
• Your GP/NHS 111
• Family member or friend
• Samaritans or other organisations (Samaritans Phone: 116 123
(free 24-hour helpline) samaritans.org)
• support.healthunlocked.com/...
We are not qualified to support you with how you are feeling, and we
want you to get the best help and support possible.
I hope the information I have provided is relevant and of use to you. If you have any more queries you would like help with regarding your pain, please do not hesitate to contact us. You can find our details here: painconcern.org.uk/contact/.
Wishing you all the best.
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