Fibro Clinic Guys Hospital

Thanks Kiki.  I pay for chiro and hynotherapy etc. Guys Hospital is NHS so free here in the UK for UK citizens. Not exactly free because I pay, like all others, through National Insurance contributions from my salary. There have physio, rheumatologist etc all under one roof in the clinic but it is a good way from me so was wondering whether it is worth the trip. Apparently it is a one appointment only to see all staff and they work out a combined treatment plan and then refer you back to GP.   I have gluten free/refined sugar free/no processed foods diet and it does help.  I only take supplements, no medications as I couldn't cope with the side effects but feel I need a bit more guidance and help from the professionals if only to make my boss understand!

I'm not in the UK but the places here I visited would make it easier as all the doctors are in one location. So they all get your labs and can discuss at the same time and come up with a game plan rather than everyone working independently while you are juggling appointments and tests. One stop shopping.

that is what we all need. One stop shopping.  The sheer effort required to get out and about is bad enough without having to visit different departments in different parts of the hospital.  Last time I had ortho, rheumy, and blood tests all booked for the same morning all in different parts of the hospital and two of the appointments running late.  Absolute nightmare.

Exactly. That's why I went to see what these pain management places offerEd. If they took myour insurance I would have signed up.would make life easier. Having my chiropractor, accupuncture, and physical therapy in the same place has been great. But to have it all.....that's the dream. Let me know if it's the same in the UK as it is here.

We both need to keep wishing!   My chiropractor is only 10 mins drive away, hynotherapist is 20 mins in the other direction. This is what the Guy's site says:-   The aim of this clinic is to provide multidisciplinary management recommendations appropriate to the individual at that time.

So this is what made me think it might be trying to persuade my GP to refer me there.

I was lucky enough to go the Bath Mineral Hospital. We had a month course of four hours every Monday afternoon. I find juicing. With ginger etc really helps me plus hot Epsom salt baths

Thanks Pollmadoll.  Did try to reply but somehow it disappeared so apologies if this is repeated.  Hot epsom salt baths are great. I had some rose scented dead sea salts as a present and have to say they were lovely too.   If you don't mind me asking what was covered in the course?  

We had hydrotherapy sessions, we were able to discuss about how we felt once we had been diagnosed, we discussed relaxation exercises and nutrition and also how to pace ourselves . Mainly how to manage it. Sleep management etc. I have decided not to take medication due to the horrible side effects and as I am asingle mother with two young sons I cannot be zombified !

thank you, that's really useful to know.  I too am medication free. I hated not being in control and being "out of it"  I am by character a very active busy person so it has been hard to learn to pace myself but a few busy days followed by the "crash and burn" taught me the hard way!

Thanks Judith, I was discharged from the rheumatologist as they said to me "we don't treat fibromyalgia here" - it was a teaching hospital so doesn't exactly bode well for future medics!  I pay myself for chiropractor, hypnotherapist and all my supplements and have basically been left to get on with it and find my own way with the help of the folk on here. So much for a lifetime of paying national insurance contributions. All the GP offered were antidepressants which gave me terrible side effects. So although I have done well for the last couple of years on my own this latest flare has "floored" me which is why I thought about a referral to this clinic - they have a rheumy as part of the team.

I would get the referral, after all what have you got to lose. I think that it will at least prove to your boss that you have a genuine condition if it does nothing else!

It might also offer your Gp some guidance on how best to help you.

I think I have fibro although I've seen a rheumatologist who doesn't think I do, I'm currently considering getting a second opinion. If I do get diagnosed I'll be asking for a referral to Guys.

( my Gp doesn't believe in fibro!)

Good luck & let me know the outcome if you go !

Thanks.  I was only diagnosed two years ago - symptoms apparent since 1987!  I was just fobbed off time and time again. Eventually saved up some money and went private but that wasn't much use - never see a private or nhs consultant on a friday afternoon before a bank holiday. He just couldn't get rid of me fast enough and charged me for the privilege! Anyway eventually diagnosed by a locum rheumy at the local hospital.  I am seeing the GP on monday and hopefully will get the referral. Trouble is I also have osteoarthritis in neck/spine/hands and feet so difficult to know which one is causing what.  Hopefully if I get a referral I won't have to wait too long.  Will definitely keep you posted.

Oh Maggers,

I thought you would write that the doc gave you script for Lyrica-pregabalin or Neurotin-gabapentin!

My rheumatologist prescribes mine andcmy neurologist has also prescribed either one for me.

Are you sleeping well, staying warm?

hugs

judith

Rheumy wrote "fibro" on a piece of paper and said "go research, we don't treat it here, just remember to keep a positive mental attitude".   That was it. I remember coming out of the hospital crying -  never heard of fibro. I had a string of questions but nobody to ask. I had never felt so alone.  I then found the helpful bunch on here to answer all those questions the NHS hadn't time for.  Those on here at that time probably remember I posted many of my poems about it on here about being in the wilderness!

That is horrible. I'm so sorry you went through that. The rheumatologist I went through said here are 2 scripts and didn't follow up with any info. After all I went through with the infectious disease and primary. She made the call but she too offered me more meds. Research and this forum have helped.

I wish I could afford the pain clinics here but unfortunately insurance doesn't cover holistic or natural healing.healing. I hope with the referral you will get the answers and the help you need.

Hey all,

Here in USA pain doc is code for addiction doc.

Try a palliative care doc.. do you have them?

hugs

judith

Hi Maggers

I had the same diagnosed on Tuesday and my rheumatologist gave me a booklet told a choice of tablets and said your GPS will take over because we can't treat Fibromyalgia.. I was in shock till yesterday and had a little emotional break.. Much better now seeing gp tomorrow morning so fingers crossed.. Not a clue about medication and for some reason he also said my blood tests showed my abnormal blood clotting so I really have no idea...

Welcome to the club nobody wants to be in!   We seem to be very much on our own once diagnosed.  Hope your GP is clued up. Mine isn't.   Trial and error as far as medication is concerned. I take nothing and prefer the supplements, chiropractor, hypnotherapist, mindfulness and gluten free diet. Cooking from scratch seems to work most of the time for me.  Epsom salts, dead sea salt baths help too.  Got most of my help from the folk on here.  Certainly more helpful than the GP

Well seen the GP and I have to wait till rheumatology send instructions to my GP... Probably another two months because when I saw him in June it took till late September for that information to get to GP and myself.. Really depressing this situation.