fibromyalgia - recommended specialists - urgent

[VIVI87]

Can anyone advise on a top fibro specialist/consultant in the north west UK area? My mum has been left for years now, it is awful to see, with no assistance. She not lazy and doesn't give up but it's like she's losing a fighting battle with herself and the NHS. Please can someone help?

[BlueMermaid3]

Hi there

I'm so sorry to hear that your mum is in a bad way.

Please can I suggest you lock your post? I can lock it for you if you wish. That way you will get many more replies.

Did you want to pay for a private specialist or would your mum need to be referred on the NHS?

Many of us have waited years, some of us even decades to be diagnosed. Due to the fact that Fibro mimics so many other illnesses, these need to be eliminated first.

The best thing you can do is to go with your mum to see her GP and ask for her to be referred to a Rheumatologist.

Unfortunately Fibromyalgia is a chronic conditon and each person suffers to varying degrees. I have had Fibro for 34 years as well as other chronic conditions including Chronic Fatigue Syndrome. My pain on a daily basis is severe and constant.

Fibro is not curable. The vast majority of us have been diagnosed (eventually) and then discharged back to our GP's with a leaflet.

Finding the right meds is a nightmare because what works for me, may make your mum worse.

Unfortunately we have to learn to manage our conditon as best as we can, trying just about everything and anything to try to relieve our pain.

To be honest with you, and this is just my personal opinion, your best bet is to find a decent GP for your mum, if she doesn't already have one and go from there.

I'm sorry my reply is not very positive. I'm just being realistic about Fibromyalgia and how it affects us.

Wishing you and your mum calmness and peace

Lu x

Volunteer Adminstrator

[BlueMermaid3]

Hi again

I have posted instructions on how to lock you post:

To lock a post when you've finished writing it scroll down to the bottom of the blue box and you'll see on the left hand side two options:

o Everyone

o Community

If you click on the Community option, this will then lock your post.

If you want to lock a post that you have already put up onto the forum, find your post and again scroll to the bottom of the blue box. You'll see a small downward arrow (v). Click on that and you will get an Edit option. Click on edit and then select the Community button as above.

Lu x

Admin

[VickiMitchell]

I was in your mums position 8 years ago the only way that got through to my GPs was when my husband took me to AanE I was in so much pain I told the doctor that I thought no one was listening he phoned my GP, don't know what he said but after that my doctor couldn't do more for me. I was under a rheumatolagist but because fm doesn't come under that he discharged me but I see a pain management doctor at broad green hospital in Liverpool even though I live in Chester, who has done everything he can to try help some thing have an some ain't, also see occupational therapist and physio. I'm on lots of meds and still have some pain different from day today but it's better than it was so I hope this can give you some ideas where to go hope you find help soon cos I know what is like to feel let down. Good luck from Vicki x ps Doctor Jones pain management department.

[TheAuthor]

Hi my friend, I am so genuinely sorry to read how your mum is suffering and struggling with her Fibro. I have pasted you a link below to our mother site, FMA UK which hosts a Fibro group cache, I would think if you contact them their Fibro sufferers may know the best doctors to visit?

fmauk.org/contactsmenu/supp...

I want to sincerely wish both of you all the best of luck.

All my hopes and dreams for you

Ken

[bnetleyfox]

Yes. Dr Chris Jenner at the London Pain Clinic. He has also written a very helpful book on it too. He charges £250 for an initial consultation but its worth it. He is relatively young and believes the condition exists - he has helped me .

[Dizzi1978 in reply to bnetleyfox]

Jumping in late but I was caught in the war between NHS CCG rules on referring and being clever enough to know i should be as i was in lots of pain and in a desperate situation. We found the London Pain Clinic online and phoned for an appointment. I got a diagnosis and treatment plan that day. Dr Jenner is very understanding. He believes in Fibromyalgia for sure, he understands the problems patients go through and to be fair, he's been a real help in regards my occupational health.

If you're in London or near by he would be a good option. I believe there are also fibro clinics at UCLH, Guys and one other London site.. i think Charing Cross @ Imperial. I have been to the endometriosis UCLH clinic and it was great, everyone was so supportive, i can imagine the fibro clinic is also.

[shark2691]

I think a lot of people on here have found pain management programmes run by the hospital pain clinics to be helpful - there don't seem to be many fibro specialists around but I wish you all the best finding one

[Hidden]

Hi,

I live in the North West and I see Professor Jones @ Salford Royal Hospital. He has been involved in a lot of research about fibromyalgia and its debilitating effects.

I hope this helps your mum xxxxx

[EllieH in reply to Hidden]

Is there a long waiting list to see Prof Jones? Xx

[Dizzi1978]

IAPT i have also found to be really useful, the lady helps me with identifying the problems, the pain being the root of most, then we have been working on pain management techniques. She has helped me put into perspective my issues with pain, and then how to deal with it. We haven't finished yet but i am hoping that over the next few weeks it will be really settled.