fibromyalgia clinic

All your fibromyalgia experiences, questions and answers.

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fibromyalgia clinic

Postby Wackers34 » Mon Nov 18, 2013 10:47 pm

I am at my wits end with my doctor- she has been helpful and understanding up until today...

She has given me diagnosis of fibro and possible cfs, but won't refer me to any specialists to help. I am not coping and need some sort of treatment plan. I asked her to be referred to the fibro clinic at Guys hospital in London. Anyone else been there? I have only been diagnosed by her for fibro and feel I need a firm diagnosis and some sort of plan for me...

Ive been having strong dizzy sensations and told her about this today and she puts it all down to fibro, i know it could be, but what if its not? No investigation, no blood pressure check (even though i know i have low blood pressure)...no mention of possible vertigo, or anything, I have been having this symptom on and off for years.
Terrified to drive when like this - not sure what to do anymore...

Asked her to be referred to a fatigue centre, shes never heard of one...Do you think its time to get a new doctor?!! (shes my third one as it is)
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Re: fibromyalgia clinic

Postby SuzyVB » Mon Nov 18, 2013 11:06 pm

Unless you live near London or bath you're unlikely to get referred to one if the two 'fibro hospitals' but many regular hospitals have good fibro programmes within their rheumatology departments. I think the fibro action website has a list but can't remember where it is
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Re: fibromyalgia clinic

Postby lrgatrell88 » Mon Nov 18, 2013 11:09 pm

I went to guys hospital clinic.. Travelled all the way there to be told.. You've got fibro, it's for life, deal with it.. I just cried the whole way home. Everyone's experiences are different though but I've found my local pain clinic so much better. They are really helpful x


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Re: fibromyalgia clinic

Postby Carrie Nourse » Tue Nov 19, 2013 1:10 am

Hi, I would see your Doctor again and tell her you are not happy and ask her to refer you to a specialist and if she does not see another doctor at the practice and ask him to. If you have no luck you are within your right to make a report and I would send a letter to the Governing Board of General Practitioners as well and explain their conduct towards you and failing to do as you ask. You can though change your practice but I would ask them beforehand if they have doctors who have the knowledge of Fibro/cf and then you know. Good Luck.
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Re: fibromyalgia clinic

Postby lindajnaden. » Tue Nov 19, 2013 1:39 am

I feel like nobody wants to help me either. I have had a bad flare up for weeks now, carnt walk with my legs feet and back, got finished from my job as a hairdresser in August, and today jobcentre ringing me up with jobs and an interview for me :( all i want to do is cry, dont know where to turn next. lindi. :cry: :cry: :cry:
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Re: fibromyalgia clinic

Postby zaininayah » Tue Nov 19, 2013 3:17 am

Hi.
Ive got fybro aswell. Went to two docs at my gp for years totally ignored for 15 years. Eventually the third doc helped me. I did ask the reception at my gp the procedure of gmc. I think that helped a bit. I slso out of frustration said to my current doctor does she feel the pain I feel? She didnt asnwer.
I would complain aswell. Ive been in bed for three days now. I feel for all with fybro. Its a shame but uve got to fight to get what u need. Look after ur self. Hope someone is with you during flareups. All the best.
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Re: fibromyalgia clinic

Postby migrembe » Tue Nov 19, 2013 10:52 am

The problem with any medical problem is that we have always been told all our lives to go see a Dr and they will sort it out. The problem with FMS is that no matter how many Dr's you see they still won't be able to sort it out. If the dizziness is a new symptom and not an ongoing one it should be looked into, but if you have had it on an off for years then it really could be the Fibro and you really will have to live with it.

An unfortunate symptom of FMS is depression, that is because our brains have low serotonin levels and less dopamine receptors, which have been seen on fMRI scanning. If you are not already on an anti-depressant you might find one useful and you should get your GP to refer you to a counselling service. As my counsellor explained to me 'something caused your mind to fuse and switch off and when it came back on everything was so jumbled, my mind was sending off pain signals, for no reason.' Getting some understanding as to why you have ended up as you have may help you to take control of it.

We all need to stop thinking there is a cure, there isn't, but we have a choice we can stay in bed all day, every day even on the good days or we can adapt to our new 'normal' lives. And as a friend who is also a Dr once said to me, 'if you can cope with things as they are, you are better of not knowing any more,' he was right, the more i know the worse i felt.

As for driving with Fibro, i don't drive but i have a friend who does and going on what she is like driving i think unless you are totally symptom free you should be banned from driving. Why? Because the pain can limit the movement in your arms and you reaction times are often slower. My friend has had a number of accidents but luckily she has never done any major damage to herself or anyone else. Ahhh!! shoot me if you want but you're dangerous on the roads.

:hugs: :grouphug: Beverley x
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Re: fibromyalgia clinic

Postby SchroedingersCat » Tue Nov 19, 2013 11:35 am

Beverley, not everyone with fibro has such severe symptoms that they struggle to drive. I drive every day and also do long hauls pulling a trailer without any problems. If I stiffen up on the long hauls, I just take a break at the services. But then I keep moving a lot and work full time so am not a typical fibro sufferer.

Wackers, I don't know what area you are in, but here in Leeds we have a specialist pain/fibro/CFS clinic which I was offered a referral to (but didn't take as I don't need it and also don't have the time required to attend as it's during office hours), I would have thought most large hospital trusts will have the same. You may need to insist to your GP that she refer you. That said, I've seen a lot of people on here say their pain clinic didn't help them at all, so please don't pin all your hopes on that. You say she hasn't referred you to specialists? My GP referred me to a physio, rheumatologist AND a neurologist to confirm his diagnosis of FM, and it was the rheumy who offered the pain clinic to me.
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Re: fibromyalgia clinic

Postby SuzyVB » Tue Nov 19, 2013 12:15 pm

I attend a similar clinic at the Nuffield orthopaedic hospital in Oxford. I was referred by my rheumatologist based at The John Radcliffe
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Re: fibromyalgia clinic

Postby *Lisa* » Tue Nov 19, 2013 12:49 pm

The clinic was run by professor davies who has recently passed away.

The clinic has just appointed another rhumatologist Dr Jenner who was working for the pain clinic in London.

This clinic is normaly private although you can be refered on NHS if your in the catchment area but the wait is very long.

I paid for 1 private session and prof davies at the time then put me on the NHS waiting list to see him again. (another way round it)

The clinic from what i have researched recently (i went back in 2007) goes on the same approach to any other rhumatologist with a combination of pain meds/CBT and exercise.

They can perscribe different meds that a normal doc may not as they are licensed to perscribe a more range of medication.

see here... http://www.fmsclinic.co.uk/

You can contact daniel austin for further information.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: fibromyalgia clinic

Postby migrembe » Tue Nov 19, 2013 8:29 pm

SchroedingersCat - i think we have had this conversation before and yes you are not a normal FMS sufferer :)

I am in Bradford just round the corner :)

I was diagnosed at rheumy clinic, got referred to the NHS counselling but it was going 18+ months before i actually would get to see someone for real so i ended up going to counsellor a center that is run by Bradford counselling services, you have to be on benefit to be seen but i was seen with two weeks. I was referred to the pain clinic in Aug got a letter that said i was on their waiting list and i think they are hoping i have gone away or even died so they don't have to worry about me any more.

I think what i was saying overall is not to expect a Dr to give you an instant cure because there isn't one. I know people who are struggling to get out of bed each day, i know people who work a normal job, and i even know a few people who would say they were cured, or had over come the symptoms or had learn to live with them, so we are all different. But a new symptom should always be checked with a Dr.

No not everyone is dangerous driving i am just saying 'if' it is causing you problems right now maybe you should take a break.
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Re: fibromyalgia clinic

Postby dejay » Wed Nov 20, 2013 1:39 pm

I started 20 years ago with realy bad pain, I saw my dr who could not give me an anser,this went on for a number of years,then a new dr came to our surgery, I saw him ,and after I described the pain which by then, was so bad ,and all the other things that were happening to me, he said you have got fibro,i had never heard of it,he sent me to see a rumatoligist who did some tests , using a blunt instrument poked parts of my back and shoulders,and he agreed I had fibro,since then my dr,the new one, has been great , tried every drug on the market , some have worked for a short time ,at the moment having a flare up ,so not brill,but what I would say to every one with fibro and to all who have not been diagnosed,find a dr who can and will help,I I think it is very important.mine is realy good , and I hope every one can find one.much love to all
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