After another pointless GP review and an unwillingness to investigate further I am going to pay to be seen privately to try and get some answers.
Symptoms are severe nerve pain (tingling/ shock type pains in hands arms feet and ankles) as well as severe pain in elbows knees and groin/hip area. Stiff shoulders and neck and chronic fatigue. Numbness to feet and unable to tell temperature with hands. Have a diagnosis of FIbro but no medication is relieving any of the symptoms. Been in a flare since August or maybe this is just the new norm..... who knows??!
Xrays are normal, bloods are normal, no signs of wear to joints etc.
Who am I best to see a neurologist or rheumatologist?? Don’t want to waste money seeing the wrong one??
Written by
Fizzwizz35
To view profiles and participate in discussions please or .
Hi - if your bloods are normal and you already have the fibro-diagnosis, in my experience no rheum. will help you check if it's anything else. A neuro can check the nerve-type pains with 3-4 nerve/muscle tests. If your money and time is limited I'd try to find a good gentle physio first or at least parallel to see if they can get a handle on it (osteopath, acupressure, ear acupuncture).
I have recently seen a neurologist private and for the initial consultation, Mri of my neck and spine and a follow up consultation it has cost me 1 thousand pounds. If your worried and looking to rule things out go for it if you can afford it.
I have seen a nhs rheumatologist and had xray scans/ ultrasounds on my hands which ruled out arthritis. Eventually leading to the confirmation diagnosis of Fibromyalgia which I have been told is a diagnosis of exclusion.
Push your gp and ask them how they plan to treat you in my experience if you don't push them they will leave you to deal with it.
Failing that I saw a private Gp at health steer and they helped with getting a referral
How frustrating for you. Personally, I would look for a consultant who is a fibromyalgia specialist. You could see a Rheumy or Neuro...only to find out they’re not that interested in treating fibro (many of them aren’t).
I’d highly recommend Dr Chris Jenner: thefibroclinic.com/about-us... He’s top in the fibro field. You can see him via video consult, so it doesn’t matter where you’re based. He will give you a plan of action and ask your GP to follow it.
I also agree with JayCeon that a knowledgeable physiotherapist would be really useful. Finding one who understands fibro can be challenging, though.
Hope you make some progress with everything very soon x
I would suggest that going private is a waste of time and money since most private doctors work in the NHS and simply moonlight in private work. As has been said, Fibro is a diagnosis of verbal exclusion, there are no other tests. We do know that pain medication only has a moderate effect on Fibro, sometimes the effect is minimal. I have to control my pain with SSRI antidepressant medication, which to be honest is the only thing I've found to work.
The pain and condition you describe is pretty normal for me and some weeks are better than others. But the bottom line on Fibro is there are no routes of further investigation, only exclusion of other conditions, and most other conditions will show in a comprehensive look at an individuals blood work in some way.
I appreciate your comment however with Covid the wait times are too long and as my health is deteriorating I need some answers. I’m aware that nearly all private consultants work for the NHS and I could access their services this way but it won’t be any time soon and time isn’t on my side. I’m happy to pay if it means I am seen quickly.
I am already on a high dose of antidepressants and they’ve done nothing and like you say pain medication has a minimal effect.
My diagnosis is provisional... my GP basically said he doesn’t have a clue, which I respect but it means I need to take control of the situation and find out exactly what is going on x
I can be seen on Friday! Even if they find nothing at least i will know one way or another. I’m sure I’ve spent more money on a handbag before now lol x
Your symptoms with loss of sensation would be better suited to neurology. I was in a similar position and wanted to rule out MS. I researched a local MS consultant at the main hospital and asked the GP for a referral letter. I imagine what you want is a scan? I paid to see the consultant and it cost £220. Sometimes they charge up to £250. I was lucky that l managed to get a face to face so had a excellent physical neurological examination. With Lockdown rules improving if you wait a while you may get to physically see someone. As l was self paying l asked for my MRI on the NHS and it took a couple of months. This consultant referred me.Dependent upon where you have symptoms, you may need a head and neck or full spine.
Ruling out other things by having MRI helps with your diagnosis by other consultants.
The MS neurologist was interested only in altered sensations not in my already existing fibro symptoms. I had altered sensation on mainly one side and headaches numbnesss and neuralgia. I asked should l have seen rheumatology or you and he said him. Hope this is of help to you. By seeing someone and once you have the results you could ask to be recommended to be seen by Rheumatology. If it’s in the letter they write to the GP, your GP will have to do it.
your GP surgery, if b12 is low, under 180ish it’s possible that is the cause of tingling etc, if you post results on pernicious aneamia health unlocked they can help you.
My preference would be neurology, but that may be because my rheumatologist has not yet found/done anything helpful other than referring me to an excellent neurologist, who has found Small Fibre Neuropathy (which it seems I have had, worsening, for 20 years). Be careful with the low B12 - some have symptoms at considerably more than 180 (4 or 500 for example) and that is always assuming that you are able to use it at cellular level. Folate can make a big difference too. (Please always test, don't just supplement). Best wishes
Rheumatologist risen neurologist they did nothing for me just recommend to gp I try antidepressants. I have been told rheumatologist will diagnosis and decide a course of action so I have just like you requested a private consult as otherwise I have a 2 year wait to see him. I am hoping to get an appointment in the new few weeks. I am also waiting on pain management referral who may come up with something also and physio. But from what I here rheumatologist is the one with answers hope this helps and get what you need soon enough.
He advised starting with amitriptyline to see would it help and if not then lyrica and if that fails come back to him for injections. He said exercise is key to managing it long term start off small walk local each day. I told him I had started doing yoga he said that us great for it keep that up. He recommended seeing a good physio. I told him the local one was no good he recommended a private one but said I would have to pay but once I had a good relationship with them then I could go back to them when in trouble for further help. He couldn't of been nicer and very patient and understanding
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Rheumatologist consultation tomorrow
New to group
Raynaud's Syndrome?
opinions please? Get me to the rheumatologist! 
Advice please. 
