I need help in finding a fibromyalgia... - Fibromyalgia Acti...

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I need help in finding a fibromyalgia specialist in the northeast of england x im desperate x

Tinkiminx profile image
32 Replies

Id really appreciate your help, im 42 years old Ive been been diagnosed with fibromyalgia for nearly 3 years but i had the symptoms long before. I want to know if anybody from the northeast of England knows of any specialists in this area id be forever grateful. Xx

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Tinkiminx profile image
Tinkiminx
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32 Replies

Hi

I'm sorry that you are a fellow sufferer.

You sound desperate, have you asked your dr?

My dr told me there were such long waiting lists in the south where I live and asked if I could go privately for the first appt and help, i replied that I could. My dr then asked around for the best consultant and phoned me, I said that would be OK, she then wrote to him and I got an appt. it cost me approx £200 for the consultation, he then wrote to my GP advising her of treatments and meds etc. It was worth every penny!

Alternatively, can you google it or a rhuemy consultant that's good in your area. Try looking up one in Bupa, even if just for a name?

Good luck and I wish you well..

BlueMermaid3 profile image
BlueMermaid3

Hi there

This may sound like a stupid question, but have you asked your GP if they can recommend someone for you to see?

Other than that Google for Rheumatology Consultants in your area. Many of them will have websites and some even have reviews from patients too.

You can also ring any private hospitals in your area and ask them whether they have a Specialist who can help you. You could then Google his name and see what it says about him or her.

You could also look for a Support Group in your area (have a look on our mother site. I believe it's on Page 2) fmauk.org and then ask anyone that you meet there.

You never know, one of our members may be able to help you too.

The forum tends to be fairly quiet over the weekend, so don't hesitate to post again on Monday morning.

Good luck. I hope that you are successful in finding one.

Wishing you less pain and more peace

Lu x

Administrator

Tinkiminx profile image
Tinkiminx in reply to BlueMermaid3

They are looking for a specialist too xxx

BlueMermaid3 profile image
BlueMermaid3 in reply to Tinkiminx

That's good. There's also the Yellow pages as well.

Good luck. Lu xx

Tel59 profile image
Tel59

Hi tinkyminx..😊..im from north east so hello & welcome to another geordie..😁..i was dignosed in march this year even though i have suffered for 10 years..i saw a new gp in december last year who told me right away what he thought i had so refered me to rheumatology at north shields hospital..i saw doctor david walker & he is sooooo lovely & is a great doctor..he gave me an mri scan before he confirmed for sure i had fribro & it showed i have disk bulges on my spine. U could ask ur gp to refere u as when i was asked which hospital i wanted to go to i chose north shields even though im in the south & inwas so pleased i did. He is the only doctor i could talk to that didnt make me feel as though i was dreaming of fibro instead of actually suffering with it..😔..i hope this has helped u even just a little bit..☺..Terri

Tinkiminx profile image
Tinkiminx in reply to Tel59

Thanks hunni will look into it x gentle hugs love x

tobyjakemolly2 profile image
tobyjakemolly2 in reply to Tel59

Hi I'm pam I'm from south shields, I'm suffering terrible at the moment with fibromyalgia I have had it for 13 years now it started off mild now I have chronic fm having to use a wheelchair when I go out and a walker inside for the last few days I have been breaking down due to pain and lack of sleep had phone consultation with gp on Friday he has given me dulox tine which I have already tried but gave me no relief as all of the other medication I have tried, he just asked me what I wanted him to do and told me to get in touch with the crises team over the weekend, I'm really struggling with my gps they just don't have a clue about fibromyalgia, I have just seen your post about Dr walker was going to ask my gp for referal is he really good I'm desperate so sorry for the long message looking forward to hearing from you . Pam

Tel59 profile image
Tel59 in reply to tobyjakemolly2

Hi Pam..😊..my gp refered me to see a rhumetologist & i chose north shields hospital & thats where a saw dr walker..he is a realy lovely doctor & put me at ease & not making me feel like i was just making my pain all up..he confirmed fibro right away after an examination & also found i had disk bulges after sending me for an mri scan..😊..im from south shields to but i was so pleased i chose north shields as i have suffered for 11 years with fribro & it was assumed by another surgery that i had arthritis until i asked for proof..but i felt so much better to have a name to my pain & be able to say what i have..😊..oh..he also sent me a letter claiming his diagnosis for free..😊..i hope u get sorted soon.😊..Terri

Daisylouoo profile image
Daisylouoo in reply to Tel59

Who is your new gp if you don't mind me asking? I'm looking for a new one as mine has left the practice and the only other one there is awful. Also I will definitely ask to see Dr walker, is he a rheumatologist? I

Dizzytwo profile image
DizzytwoModerator

I don't wish to be a downer BUT from my experience from when Fibro never even had a name.

I would say beware of so called fibro specialist. There are many who have jumped on the Fibro band wagon and have now made a lot of money out of our ilness.

There is no known cure for what we have unfortunately. So please be aware. Many I am sure have spent more money than they could afford to be told what they could learn by reading google. Or speaking to others like your self on here.

What ever you decide to do I wish you all the luck Iin the world.

I have had Fibro for over 30yrs and I have yet to hear of anything I had not heard 30 yrs ago. xx

Mo

Hands_1 profile image
Hands_1

I was told that I had fibro and he said that I should be on 3 amatryptaline each night. My GP had started me off on steroid tablets which gave relieve the first day of taking them. I am on 8mg at the moment,but was started off with 10mg. Nasty tablets but do we want to have pain forever. Go to your GP ask for help as there is aymptoms that he should know like both arms at top both wriats top of legs called the skirt etc. few mistakes sorry about spelling. I am now feeling normal again.

peck profile image
peck

Tinkiminx, Sorry but I'm in the US.I hope someone passes by that can help.Take care and best of luck.Peck🐤

Hilsam profile image
Hilsam

I also see Dr Walker. I see him at the Freeman, he works across several local hospitals. He is very good, and has a special interest in Fibro. Hope you can get to see him. All the best with it, Hilary

Tinkiminx profile image
Tinkiminx in reply to Hilsam

Sounds like this could be the way yo go x thanks so much x and gentle hugs x

Hilsam profile image
Hilsam in reply to Tinkiminx

I do think it helps see someone like Dr Walker, who has a broad knowledge of the disease. However, as others have said, there are only a limited range of treatment options in conventional medicine. There is no cure and treatments can help , but not necessarily solve problems.

iI personally have found acupuncture and other alternative therapies the most helpful options, apart from tricyclic antidepressants, which have helped with sleep. Everyone is different and respond differently to therapies. Much of it is trial and error.

I do hope you manage to get some appropriate advice and support. Hilary x

Tel59 profile image
Tel59 in reply to Hilsam

Glad to know ur seeing a good doctor hilary..😊..he is a very good doctor & im glad i got to see him..u take care..😊..Terri

TheAuthor profile image
TheAuthor

Hi Tinkiminx

I am so genuinely sorry but I am not from the North East so do not know any myself. As Lu aka BlueMermaid3 says if you can find a Fibro group they may be able to give you some good names? Also, please bear in mind what Dizzytwo says as currently there is no cure for Fibro, so please do not spend more than you can easily afford?

There are some medications out there that members have had some degree of success with and may be worth a try once you have a good discussion with a doctor. I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

Kayleigh_91 profile image
Kayleigh_91

Hi tink :) I'm from the north east too. I was diagnosed at 18 and privided no information/advice/ support...nothing, gotta admit a little scary especially being so young buy after 7 years of no answers and desperation quite like yourself in have been referred to a pain management clinic located at Sunderland royal hospital and I am about to have a 3rd appointment in September. They deal with chronic fatigue (CFS) and fibro and try to help you to mange to have a day to day 'normal life' or as much as possible without just chucking more pills at you they don't give meds at all. Very new to the process myself still that they have but it is nice to have the chance to see if it will help. And they are friendly and they have an initial appointment with you to try get to know more about you to determine what routs may help you most.

You could ask your GP to refer you?there is a waiting list but it was too long for me to get the ball rolling.

Good luck!

Sending peace and love your way

Xx

Tinkiminx profile image
Tinkiminx in reply to Kayleigh_91

Ive been right through the pain management clinic x they were really good. But im beyond their help, thats why both me and my GP are looking for specific specialist x i know they exist its just where the nearest ive fiend is london x

Thankyou ever so much for youf kind words and gentle hugs x nd i send them back ic ever you need me im

Here to help to x

Kayleigh_91 profile image
Kayleigh_91 in reply to Tinkiminx

Ahh that's a tough one bless you! I'll keep everything crossed you find the right people to help!

Thanks very much to you too!

Xx

Tinkiminx profile image
Tinkiminx in reply to Kayleigh_91

Hope some of these comments. Help you too x

Kayleigh_91 profile image
Kayleigh_91 in reply to Tinkiminx

They certainly have thanks :) xx

Royalspec01 profile image
Royalspec01

Hi there you sound so distressed about this illness and know how you feel, I'm afraid there's no fix from this illness. The only thing is to manage it as best you can and come on this sight you wont feel so alone. One thing I would say which I've learnt myself is to limit the amount of involvement with people who are really well in themselves if find I'm unable to keep up and this can be distressful to. I find if I don't socially interact with peeps like myself then I can come to feel isolated and alone not good for fibro. This sight is full of info experiences and this is about as good as it gets. A specialist can only give info and we can research this ourselves. The administrators and fellow members are usually gened up with info. I've learnt much from this site. I hope you do too x

Kayleigh_91 profile image
Kayleigh_91 in reply to Royalspec01

I think as the years go by the understanding of it does tend to get clearer and since finding this forum ito has massively made a difference to the whole 'feeling alone' aspect of things.

I'm the opposite I like to surround myself with energetic people and my little nephew is a ray of sunshine on a tough day, it's just perceiving and learning to cope I guess.

Thanks for your kind words and I too have learned a lot from the forum :)

Xx

Tinkiminx profile image
Tinkiminx in reply to Kayleigh_91

Just found this app by accident X it's really good and not as despondent as other sites X it's us all helping each other.

At the mo I just feel as if I've tried everything Nd got no where left to turn.

But optimistic with some great comments x

Kayleigh_91 profile image
Kayleigh_91 in reply to Tinkiminx

Positivity is definitely a key factor as something as simple as feeling down and low can add to your pain! If you feel you've exhausted all angles you have definitely came to the right place. A place that offers empathy , support, care and a good friendly laugh :)

Gentle hugs

Xx

Tinkiminx profile image
Tinkiminx in reply to Kayleigh_91

Yeah quite low and desperate as nothing is changing X nothing working at the mo

Tinkiminx profile image
Tinkiminx in reply to Tinkiminx

Thanks hun

Tinkiminx profile image
Tinkiminx in reply to Royalspec01

Thank you so much X

Tinkiminx profile image
Tinkiminx

I suffervfrom asthma too and severe hay fever so had steroids fir that xx

Hands_1 profile image
Hands_1

Hi again, yes I have osteo/fibro just been told after years of good years and bad one's. As I tried to walk into the docs she said that the steroids would help as by the time I could get up there I could not lift the duvet or walk properly. I have noticed though my hands are very shaky still. Spill tea,but I can get up now nasty tablets the steroids the doc at the freeman said,but as I said better be out of pain. Nothing will help the osteo. but painkillers and the night tablets I get electric shocks up my hands into my arms.

I am not sure where you are but in the north they are very busy and the waiting list is about 12 weeks. Great Doctors there. I go to a place where we knit (hate it) and croquet (hands go in the cramp) but it is company twice a week. Hope this answers about fibro. Pain killers for osteo steroids cause I could not walk. or sit down especially on toilet what a bugger.

t

GemFriend profile image
GemFriend

Hello, I know this is an old post but after a really horrific day and a hospital visit my Boyfriend has sent me a link to the group. I also live in the north east and it’s time I had some real help from a doctor. I think I might ask for a referral to that doctor you mentioned at north sheilds. How are you now? X

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