Hi all FM sufferers, can any of you recommend a Fibromyalgia Clinic / Rheumatologist in either Barnsley, Doncaster, Rotherham or Sheffield (who specialise in FM)?
I have come across the Rheumatology Clinic at Guys Hospital in London, but it is a long way from where I live in S. Yorkshire. I will ask my GP for a referral to Guys if I cannot locate a similar Rheumatology Clinic closer to home. On their website it says a first appointment at Guys takes around 90 minutes and you see more than one specialist I understand: consultant rheumatologist - physiotherapist – clinical psychologist.
Has anyone been referred to Guys and is it as good as it seems to be?
Anyone had a referral to a similar clinic in S. Yorkshire?
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JeannieMc
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Hi JeannieMc , if you would like to look at our Mother site fibroaction.org you will find that there is plenty of advice and names of various specialists in certain districts which may be of help to you.
Hi Ken, the fibroaction address has very limited links, and there are only two for the whole region. I'd be easier hopping on a train to London in fact. Maybe we should all be encouraged to update that part of the website as we all know how difficult it can be to find the 'right' gp/consultant these days. I contacted them recently to inform them that their info. re: 2 local support groups was obsolete; I got an email back thanking me for taking the time to inform them. I phoned 111 yesterday to see if they could help me, and a really great nurse did give me some info. re: more support groups. If they are 'working' then I'll email fibroaction, and update them.
I have mailed the boss and she says if anyone has information or details to update and upgrade our information then it will be greatly appreciated.
So if anybody has information about groups, Fibro Friendly GP's or hospitals then please contact FibroAction and our site can be updated with the new information.
I think this will be very useful and appreciated by everyone!
Hi, Barnsley are hopeless!! I saw a Dr Jarret at a private hospital, near Leeds- my GP wrote to him- then continued through NHS with him at Pinderfields . He helped with my fight for pension. Unfortunately around here if you have fibro they do not see you for follow ups. I have a query result of lupus and sjgorens so am seen regularly at Barnsley as on plaquenil. There is a pain management clinic linked to Barnsley though. Good luck - hope you find someone local xx
I'm guessing you saw him initially on a private basis??
This Dr. Jarret is fully 'in the know' then about fibromyalgia? Is he a rheumatologist? Do you have his contact details/website info. so I can check him out please?
The neurologist I saw at Barnsley, did not want to deal with fibromyalgia and has suggested to my gp that I see either a rheumatologist or someone at Sheffield, re: chronic fatigue syndrome.
Hi jayfer, I found the doctor. Dr. Steve Jarrett, Consultant rheumatologist, specialises in osteoporosis and bond health.
I might just have found the 'man for me' lol..
I injured my 5th and 6th vertebrae in 2011. I am wondering if I have developed FM from the 'trauma' of my injury. He might be able to help me if he is into 'bones'. I will check him out but defo. will give Barnsley a 'miss'!!
Many thanks. God I'm loving this 'community'. It gives me hope and is making me so much less 'miserable'.
After seeing a Neurologist, who suggested to my GP, that I see a Rheumatologist for a diagnosis, we discussed where I would like to be referred to. I specifically said definitely NOT Barnsley, as I had heard from a few sufferers that it was not good. GP assured me that an appointment would be made for me elsewhere. An appointment was subsequently made for me at BARNSLEY!! I should have contacted my GP but had a lot on my mind with work, and just thought to go with it. Another poster had said that the pain clinic at Barnsley was very good.
Anyway I had my appointment yesterday, and frankly it's made me depressed. I forgot to ask the consultant to send me a copy of his report, and phoned just now to request a copy. I also did not know his name but was told by the rheumatology secretary, that she could not give it me as he was not a regular doctor there?? She said she would get a copy of the letter sent to me.
The consultant, while very nice, told me that my 'dizziness' ( which had gone away almost over the last 6 weeks or so, but had started up again this last week) was not a symptom of FM. He said I needed to see an ENT specialist; told him I saw one last year, who told me my dizziness was not ENT related, but probably related to a neck injury. ENT had suggested a Neurologist referral, who also said it was probably related to my neck injury and told my GP to refer me to a Rheumatologist. The Rheumatologist said ENT was wrong, he disagreed with him!! His only suggestion was I double my meds. Gapapentin from 600mg a day, to 1200mg. There was no follow up appointment, no pain clinic offered - NOTHING!! He 'tested' my pain points, which were 'painful' of course; he was not 'gentle' about it either - it hurt. He tested my knees, hips for R. arthiritis. He asked me if I slept; NO I am an insomniac, but can stay in bed forever sometimes due to fatigue. I explained my cognitive difficulties; FM 'fogg'. I told him I was depressed. I hoped I covered everything but know I did not due to the 'fogg'.
Fibromyalgia symptoms can make life extremely difficult for those who have the disorder, making it hard to go to work, finish housework, or just get out of bed in the morning. In addition to chronic headaches, difficulty concentrating and muscle and joint pain, many fibromyalgia sufferers also have to combat chronic dizziness. This dizziness can last for mere seconds or as long as a few days, causing headaches, nausea, and even fainting spells."
Anyway what really upset me was he said I had MILD case of FM on the spectrum!! Ordinarily this would have been music to my ears, but I have had to quit work, take redundancy from my teaching role as physically I could no longer cope with the job. MILD FM would have meant I could work; so obviously I should not have quit working, should I? Yesterday, when I saw him, I felt like 'shit', had most of the major symptoms going on. For example in the morning had been talking to my phone company but had to give it up as I was struggling to follow the conversation!! I was in pain; so fatigued I could have dozed off in the waiting room; so dizzy that I know I should not have driven my car etc. MILD!! I have been trying to get help since last August and this is where I am at: unemployed, unable to work, with a MILD case of FM.
I have made an appointment to see GP but have to wait till June 9th. GP's are so busy of course; why is it whenever I go, the clinics are nearly empty, yet I have waited weeks for an appointment?? Now I'm in a rage, so better stop writing.
Please offer me some advice, as I feel 'defeated'.
I too went through ENT for dizziness etc. 2 wks ago it got bad, while driving!!! Luckily I had a GP apt that day. He has put me on betahistine dihydrochloride for Meniere's disease, to see if it helps, and it has. I'm not falling asleep every day and dizziness reduced greatly. It's for vertigo, tinnitus, an ear disease, so will wait till I go back in 1 mth to see what happens next. Sorry you had a bad deal at Barnsley, I don't rate them
I should have gone somewhere else, not Barnsley. I was trying to 'please' my GP, who has been very good to date, and did not complain about her making me an appointment at Barnsley after being specifically told I did not want to go there!! Lesson learnt!
I also have a bad ear problem: tinnitus, infection, 'full feeling', hearing problem. I am on the second month of nasal spray that is useless. I asked the Barnsley Rheumatologist if my ear problem could be related to FM, and he said NO. I have just found out this morning, that Ear problems are assiciated with FM:
"Symptoms Associated with Dizziness
There are numerous dizziness symptoms. These include:
headache
fainting or near fainting (this is also 'dizziness'; which I also suffer from - I nearly passed out in the shower yesterday morning before my hospital appointment!!!).
sweating or chills
blurred vision
hearing problems, including tinnitus"..........
I have tinnitus, an ear infection, and have chronic ear/hearing problems. ENT said I am almost deaf in left ear.
I feel even more angry at this so called rheumatologist from Barnsley. Should I complain formally or not; what do you think??
Hi, I am profoundly deaf with high frequency sounds ( inherited) normal hearing for low frequency. I would wait until you see your GP before making any decisions re complaint. Every time I go there I come away deflated although am on plaquenil for lupus and sjogrens, they will not confirm I have it. If you have no follow up apt maybe you GP will now refer you elsewhere. I too was told there was no link between FM and ear problems. Sorry I can't be of more help xx
You have been a great help!! Apart from just letting me 'rant'. I am not going to complain; don't have the energy LOL. Have to take part blame as I was 'warned off' but chose to ignore good advice. Barnsley are posting me a copy of his report.
hi, pleased you found him, my memory is bad today, Methley Spire just came to mind, not sure if that's where I saw him initially. Although he helped with pension, he didn't help with lupus diagnosis, but is a thorough doctor, Good luck xx
I went on to have physio, pain management- 6 wk course 1 day a wk, got insoles from podiatry and had scans, nerve ending tests etc but as I said it was for pension purposes so once I had letter that I wouldn't work again I was not followed up. I can't really say if he is good but felt he did listen, although I am now on meds for lupus from Barnsley and they do help, which he didn't give me. It would be worth giving him a try instead of travelling to London maybe
I'm having to give up my job due to my health; I can no longer work the 60+ hours a week my job requires. I had the choice of either being dismissed due to ill health or take compulsory redundancy (there's a reorganisation going on). I have chosen redundancy as at least I'll get some money to live on for a while.
Therefore, I really need to find someone who will also state I cannot work again in order to get benefits. If not, ironically, I will have to claim jobseekers, and look for a job!!!
I would prefer to find a rheumatologist who specialises in Fibromyalgia, and understands how a neck injury can lead to FM. You have other conditions that I don't have. I think I will try to contact him first to see whether he is the right guy for me.
Thanks a lot though, you have given me some really useful information. It is a minefield trying to get the right help. It is made worse by the fact that it takes up to 18 weeks to see a specialist. So far I have 'wasted' 18 weeks waiting to see an ENT specialist; 18 weeks waiting to see a Neurologist. It will be another 18 weeks to see any Rheumatologist unless I see one initially, privately.
Hi I was diagnosed by rotherham on the 26.02.14 and I have already been for my first physio. I went to rotherham for my first rheumy appt and diagnosed in 20 mins of assessment. Alot of people knock them but from falling really ill and diagnosis all in 9 months. The gp and doc's have been brilliant so far just need to see what the ongoing care is like x
Hi. The hospital is rotherham district general on moorgate. I can't remember the consultants name but he is one of three there. Im sure when your gp refers you and states why the referral they will place you with the most suitable consultant. He was great. Referred me to a rehabilitation team told me what meds to start with. So now I am on amitriptyline and tramadol seeing a physio for acupuncture. Im already part of a gym as I push myself to keep active regardless (there are days where I push myself too far)!! I hope you find the right person for your needs.x
Yes the acupuncture is on the nhs it falls in line with the physio the place I go does physio hydro therapy acupuncture and other therapies I think. I had the choice of either going to the hospital or a rehabilitation centre. Hope this helps x
hi, pleased you're getting advice on here that you need. Just had a thought!!! If you get redundancy package it won't take you over the limit for benefits will it? Please look into it as when I got pension they wanted to know where the money I received was being spent on- it paid my mortgage so that was deemed ok. xx
Hi, I'm not an expert in benefits but my ESA is reduced due to receiving a small pension, my DLA is not but there is a limit to savings and if over that amount (£16,000) you will not get ESA. If you have over £6,500 your ESA benefit is reduced. I believe its similar for PIP. Hope this helps x
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