Can anyone recommend a private fibro specialist in London/SE area? I'm at wits end

[Alanna012]

Hello all,

Firstly thank you to everyone on this forum who helped me through a really low patch last week and gave me advice xxxx

I would appreciate any advice on a doctor who understands Fibro that I could see privately. I need some medical support from someone who both understands and has an interest in fibromyalgia and thyroid as well if possible.

Today I went to see another GP who I have seen before. Spoke about my burning mouth and throat pain, explained how low I've been. Including how depressed I felt.

Well I got told that I am 'doing too much' and need to rest.....expect that I have told this doctor many times that all I seem capable of doing these days is resting! If I rest anymore I will be comatose. I told him that one day of normal activity meaning 'average stuff I did before' like cleaning the kitchen, going to the supermarket, coming home and cooking can leave me in bed for days. That I have not worked hardly at all for months, am in danger of losing my job and am failing at uni because I'm sometimes too tired to do assignments. That even when I feel ok, I usually don't exert myself because I'm afraid of a backlash. That I felt I was doing ok and tried really hard to maintain it, but now have this new symptom, and feel very low. Still told I am 'taking on too much' and should rest and I am 'in denial' about my illness.

Bitter laugh! That is actually impossible. I wish it were possible for me to still be in denial like I was in the early days!

I have just spent 7 days stuck indoors on the sofa. Resting because I have no choice.

Today I went doctors, brought some technical pens for my son to use in his course and came home. That's it.

He says my throat is red, and inflamed looking and mouth very dry but 'that's nothing but stress' - The fact that it could be anything else or that I could be stressed due to actually feeling rubbish is not considered. No I am causing my own stress apparently.

I should drink more water to bring my fever down and my mouth is dry due to dehydration! - Seriously I'm drinking all.the.day.and.all.the.night. Walking around with 2 bottles of water in my bag and sucking Rowntrees ice lollies each evening. Waking up and sipping water in the night. I am drinking 24/7 because of how uncomfortable my throat is and I feel feverish and ill. I said I'm drinking loads of water, but he interrupted me to say that 'fibromyalgia oftens burns itself out after a couple of years' when you 'take care of it' (so its my fault for not taking care of it) and it will get better when you rest. I felt like banging my head against the wall.

Asked for a note. Asked why I need one(!) after everything I said.

I don't feel I have any support. I'm trying to get my life together and need a doctor who understands and who will listen.

This experience with doctors is getting me really down as then I feel no one understands and if I need a note for work or something its a fight each time to get one, and some support.

I know people say "change your GP" but honestly I've seen 5 GPs in my practice and I have had 2 tell me they don't know much about fibro (and respect for that at least) one who was absolutely terrible, and the remaining 2 seem to think I am somehow exaggerating or not helping myself i.e. I am bringing it on myself. Despite no evidence of this. Despite me doing my best to move my life forward, doing my best to keep up with activities,depite me pushing through a lot in order to get stuff done with little support. The irony is I'm now stressed at the thought of going doctors and feel anxiety about going.

I've no referrals to pain clinic, or physio, or thyroid clinic or CBT (considering they keep thinkkng I'm stressed) Nothing. Was initially refused even pregabalin or gabapentin before I even asked for it.

So I have no confidence that I will get a better GP in the NHS and am resigned to having to pay. So if anyone can recommend someone it would really help.

[Dinkie]

Hi Alanna

Seems you have a similar experience to myself. Suggest you do the following:-

Write to your GP and ask for a referral to Guys and Thomas's Fibro Clinic (its a one off appointment). My doctor refused time after time to refer me, so this was the route I took. I then, 3 days after delivering the letter, asked for a telephone consultation. During the consultation I had a meltdown and hey presto - one referral. I had also contacted my MP and he agreed to write to my GP if my own letter didn't get the desired response. Have to say that they were quite helpful at Guys and wrote a detailed report to my GP with suggestions for pain management etc. Worth a try before going down the private route. I saw a private guy once - absolutely useless - just because you pay it doesn't necessarily make your treatment any better. Once your request is in writing there isn't much they can do to deny you ever asked for it!

[Alanna012 in reply to Dinkie]

Thank you for replying. Is the Guys clinic much better then? I do hear thats its good. I have been to see Rheumatology and got nowhere. In and out in minutes.

[Dinkie in reply to Alanna012]

At Guys you will see several people all with different specialties. I saw rheumatologist and a psychologist and physiotherapist. Was there a couple of hours. I went on a Friday and by Monday I had a local psychologist phone me for a telephone consult and within 2 weeks was in a group for 8 weeks. A detailed letter from the Clinic was sent to my GP with various recommendations from pain clinic to suggestions for medication and other things to help. As I said in the original reply it is only one appointment with Guys and they only accept people who actually have a diagnosis of fibro. They treated me with kindness and respect and listened so it was quite a novel experience!

[bourne]

Guys and St Thomas hospital a great team in there that's where I got my second advice to make sure it was fibro good luck they were very help full angea