Hi, I'm a new member and I finally discovered I had Fibromyalgia last Friday.
I went to the doctors in August last year after months of suffering with my hands and wrists. It was first thought that I had Carpal Tunnel and I tried Naproxen for the pain. This made me feel awful and the pain did not subside. Eventually I was referred to physiotherapist for my hands. After a few appointments it was clear no progress was being made and we discussed seeing a back specialist after they discovered my neck pain.
This takes us up to January this year. The back physiotherapist is proving pretty pointless by now. She encouraged me to change my posture, which strained more muscles and made me feel even worse. After a few cancelled appointments I was then referred back to my GP.
As you can imagine I was at a complete loss by now. After returning to my GP twice more I broke down in tears and practically begged them to do something. I was then referred to another hand specialist.
A nerve test came back negative for Carpal Tunnel. The specialist referred me back to my GP but advised me to see a Neurologist.
In between waiting for communications to be passed on I return to my GP and ask for blood tests. ( Have previously been denied these by another doctor). This shows no anaemia which it was suggested I might have.
Return to my GP to find him most unhelpful. He suggests that it would doesn't see the point in seeing a Neurologist it might not help at all. I ask if he can test me for anything else? Not really is his response. Can't be bothered more like it.
There is currently a 3 month wait to see a Neurologist in my area.
In the meantime I start do some research myself. I came across an article my friend shared. Fibromyalgia? What is this? I have all the symptoms of it.
I returned to my GP making sure to make the appointment with the most helpful Dr. there. I take in the print out of the symptoms of Fibromyalgia off the NHS website with near enough the whole sheet highlighted. He smiles and nods.
Says that this wouldn't have shown up on the blood tests. He is agreeing with me! Starts to talk me through the condition and offers me a real life prescription!
After months of feeling like I was going insane and becoming more and more exhausted and depressed I finally have my answer. I was prescribed Dopselum and have noticed a real difference already. I now understand why I feel like I do.
Sorry for the long post! But felt like I needed to give you the full facts. I was wondering if you thought I should still see the Neurologist? I still don't have an appointment so it's something I would need to chase and know it will be a long wait. How helpful would it be to see one?
Just happy to finally have acknowledgement from my Doctor.
Thank you for your time.
Natalie
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Dosulepin* sorry! This IPad changes my spelling. I was thinking the same, not sure what more a neurologist would do? Thought it was worth asking to make sure I was on the right train of thought.
It cannot hurt to see a Neurologist, and possibly a Rheumatologist as many of the members have both (I do). It may be beneficial to discuss out-and-out pain killers with your doctor as the may come in handy when your pain is worse?
I want to genuinely wish you all the best of luck.
Sounds just like my ordeal to get a diagnosis... I to was told carpal tunnel then arthritis and depression! My Dr was fab and listened to everything I had to say! I was diagnosed in 2013! However, after the first year I could no longer walk without crutches and my balance was all over the place! My pain consultant recommended an MRI of the brain which showed normal activities but still not happy,he has refered me to the neurologist who I see next week! Will ask some questions and get back to you!!...much love...ninja...xxx
Thanks ninja! Definitely let me know how you get on any news is helpful. Toying with the idea of paying for private as suggested below. But I want to know what to expect. Hope it all goes well for you!
If you can afford it call the London Pain Clinic in Harley St and ask foran appointment with Dr Jennr. He helped me but the cost of an initial visit is £250. he is the best! I have nevr heard of dopselum. Are yousure its correctand you haven't ben prescribed Duloxetine
Thank you for your message bentleyfoxer. I was prescribed Dosulepin which has really helped with my sleeping and I've had noticeably more energy and a better mood to tackle the day. Thank you for your suggestion of Dr. Jennr will seriously consider it. Hope all is well with you.
Just to let you know Dr Jenner does take NHS referrals too now, you would need to speak with GP for a referral - My personal referral to Guys Hospital Dr Choy had to go to a funding panel I am unsure how it works now as that was 6 years ago.
I demanded to see a neurologist and when I went he was annoyed that I had been referred to him. He did do some nerve conduction tests and then said it was not MS after I had paid for an MRI. That was 4 years ago and I still have trouble accepting the fibro/ME diagnosis especially when I get the tingling in my hands which keeps me awake at night. The rheumatologist I saw also said he didn't think I had fibro just ME but my GP says he thinks it is fibro. The pain is terrible. I don't know who to believe
Hi PatDoyle thanks for your message. I really used to suffer with my hands and it stopped me from enjoying driving, crocheting and sewing. I suffer with them less now but still get pain in my wrists. I found Ibuprofen gel/ deep heat cream helped. I also bought some wrist splints which I sleep in every night. This might help your pins and needles? Hope this helps you in some way.
Just been tested for vitamin d and am deficient so am now on tablets for that. Also blood showed neutropaenia which is lack of white cells but gp said my blood has had that for the last 20 years. The pain I get seems to go from one area to another.
My doctor only said vitamin d levels are low. He never mentioned calcium etc although he did have all my blood results on the screen. Have to be retested in 6 months.
The dose is 1 a day for 5 days and the 1 a month for 6 months. Each capsule is 20000u. I have had an MRI which showed disc problems in upper and lower back.
I'm under the National Hospital for Neurology and Neurosuregery and I have found all the doctors there very helpful. I'm under a neurologist and neurosurgeon, and consultants at their migraine clinic and their pain management clinic. However, I'm under them partly because of other conditions I have, besides fibro, but I think it might well be helpful for you to see a neurologist.
Hi, I will be watching the answers to this with interest! I have been diagnosed but also think I have chronic fatigue, I don't know where to turn next. The fibro clinic might be worth the journey.
My rheumy said to me that fibro doesn't stop you from getting out of bed but I am currently finding it really hard to get out of bed at all. Even bathing can be a problem, maybe that means I have CFS too.
Egg custard I was diagnosed with CFS and when I was referred to the CFS clinic they said the pain was most likely fibro even though the rheumatologist said I didn't have fibro.
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