Hi all Reading through all the blogs about lack of GP treatment / understanding and totally understand and agree.
I recommend pushing for referral to FMS Clinic London as they really helped me and I've notice someone else has blogged about Professor Davies who is at this clinic.
After reading the questions have found that people are discussing Professor Davies and the FMS Clinic and I have posted under this subject.
People have mixed opinions on the help / advice received from FMS Clinic and as I have posted under this question as I found it helpful and think that what is helpful from one person may not be helpful for another.. My experience helped me to live with FMS and I believe that its worth a try because it might help or might not
And if it does then its great ! and if not you have lost nothing.
Thank you for finding this and for posting it. It has reassured me that my Doctor has prescribed the best he can for me. Had my doctor been useless it would have been interesting to have given him a copy!
I was diagnosed at Guys Hospital and was sent away with a leaflet and told to see my doctor. Luckily for me my doctor has continued to work with me in what I find out and in the information I pass to him.
The Power point is very good although I worry for some on the exercise section. I found Tai Che crippled me and that was years before my diagnosis. Since then all areas of exercise have caused me great problems. Only recently the USA Fibro groups have managed to stop the compulsory step exercise of fibro patients. Maybe this area needs to be looked into more regarding more areas.
I looked into the research of Professor Davies in 2005 and did not find it very good. I will look for the post regarding it on search and maybe comment there. Thanks for posting.
I haven't quite read through the power point yet, rather long ( trying to watch Take me Out from last night too) however it looks great, thanks for popping it on here!! xx
Hi I'm glad some of the information is helpful and all we can do is keep searching and sharing research in the hope it helps us to gain some control over this debilitating illness.
Hi Thanks for posting this information and I hope it helps anybody that can try it.In my case I wouldn,t be able to travel to London I can hardly walk to my door some days and can be limited on sitting for more than 10 minutes at a time. I have had Fibromyalgia for 15 years now and in the first few years most of the doctors didn,t want to know.Even when some started to believe what I was saying I have only been offered more tablets and I was told that going to a Rheumatologist, pain clinic etc wouldn,t help me. I know everybody is different with this condition as some people seem to still be able to work. I lost a job I loved through it although I was given 12 months off without any problem at the beginning. I think I must have come from the wrong area. I have however joined a support group and one of the ladies I am in touch with did go to this clinic and did come away with a more poitive feeling as like myself she had been told nothing and we live about miles apart. I wish everybody all the best doing what is the best for yourself.
Like yourself I have got too bad for most of the treatments out there now.My arthritis has got so bad that it and the fibro are relentless.
The rheumatism professor I saw said that acupuncture was no good as I had too many positive markers for fibro so it would only aggravate problems and these should be considered when looking at treatments.
The only thing I am finding of use is to gently manipulate the muscles by light massage with creams and use heat therapy. I have a infra red heat/massager. Cannot use the massage function though. I used to use a jacuzzi mat that was placed in the bath and that was good until a year back, this house is so awkward that I cannot use the main bathroom any more.
I am trying to get enough help to be able to attend a local hotel (almost completely opposite the flat I move to soon) that has heat & jacuzzi rooms and a heated pool. I fear greatly that if I am left to just use a wheelchair and have no exercise the muscles will waste. Maybe this will be of help.
Hi Thanks very much for getting in touch. It does help to know others care and also know what we are talking about. I do try creams but very gently and sometimes they help. I have to be careful as all my nerve endings seem to come to the top and sometimes just wearing clothes sets them off. I haven,t been able to wear trousers etc for years as they drive me crazy. Even some skirt lengths which catch the legs are the same. I do have very dry skin and water seems to disagree with me als9. What a mess. Think I need a good shake up. Managed to get to the dentists today but the 10 minute car drive and then my appointment being later than booked as left me in great pain tonight through sitting. Worried right now as I have to go back tomorrow to have a root extracted. Then next Tuesday I have to try and make an eye appointment at a hospital nearly a hour,s drive from home. I had been attending one about 10 minutes away but they keep changing departments. If only they would be able to understand how Fibro. affects people. Sorry to go on when you have your own problems but it sometimes helps to have a little moan. Very kind of you to get in touch. Just hoping for a reasonable nights rest - fingers crossed. Wishing you all the very best. Keep smiling and never give up. Perhaps tomorrow they will find a cure. We can always hope.
Wishing you all the best with recovering after your appointments. Please contact me any time through messages if you like and if you think something that helps you is good please post.
My skin only goes super sensitive just as a flare up starts.
It is so hard for us to work out what is happening on any day that we will never get others to. So complex they cannot be bothered.
My skin too is getting so dry
Have just eaten 2 sausage and 3 chips and pulled my stomach, this is my worst problem at the moment.
You're so right, never give up hope. Will keep you in my prayers
Fi
I was under professor Davis at guys and didn't get to see him just one of his side kicks. I didn't find her helpful at all and found I was in and out with in 5 mins with not even a follow up appointment, told to go back to my gp. I also was lucky that my gp had the knowledge of fibro and as been more helpful then any hospital. I would like to add that the meetings held on a Monday night was very helpful and I learnt alot from people who also attended them.
Sorry meetings I'm talking about were at guys at 6pm.
"I recommend pushing for referral to FMS Clinic London as they really helped me and I've notice someone else has blogged about Professor Davies who is at this clinic. "
"People have mixed opinions on the help / advice received from FMS Clinic and as I have posted under this question as I found it helpful and think that what is helpful from one person may not be helpful for another.. My experience helped me to live with FMS and I believe that its worth a try because it might help or might not
And if it does then its great ! and if not you have lost nothing.
I was seen by this clinic as NHS referral from GP on Primary Care Trust funding but I think others have gone privately . I would not like to comment on the private clinic and would recommend NHS referral which may be beneficial to some if funding is agreed .
Sorry I was definitely a NHS patient only at guys hospital seen by the team under Prof Davies . No private treatment at all . Attended rheum dept at guys so I think if your GP can push for funding anyone can have a NHS referral . Cannot comment on different areas and the funding available (like the so called postcode lottery ) but I think it's worth asking your GP about the possibility of a referral .
Just to add, I had to put a case to my doctor as to why I should be referred to Guys. I read up on the NHS Charter and quoted as much bureaucratic rubbish as I could. When I came out I was concerned that I had been too coherent and the doctor wouldn't believe me. My husband assured me that it sounded like I babbled and seemed quite odd. I thought I'd blown it and felt really down - yesterday I got a phone call from Guys and I have an appointment in March. I have had two courses of trigger point injections from Professor Davies privately and they were pretty good. He charges less for people on benefits which I think is a generous gesture for people like me.
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Reading through all the blogs about lack of GP treatment / understanding and totally understand and agree. 
New fibromyalgia info for me
Free parking close to guys hospital London bridge area?
24, London, Living with M.E & Fibromyalgia
Pain clinic 
