Fibromyalgia ??

[pb]

Been to gp again who now thinks that i might have fibromyalgia , after all this time (6 months) and pain.
Have also had to stop taking the diclofenic as causing problems with my stomach , ive been give paracetamol and codeine but i know they do not really help as much.
Am going to be referred to another rheumatologist.
Feel very stressed and tired about all this..

[sarah jayne]

Hi, im always here if you ever need a chat. You know ive been going through exactly the same. My doctor hasnt been any help all i got is a leaflet and im back at the rheumo in 3 months. How crap is that ! Are you on facebook, theres a good group on there that ive joined, ive also been reading a book called ' the first year of fibromyalgia by claudia craig marek. Ive also been having stomach problems recently, at the moment all im eating is plain pasta, lettuce and cucumber, its crap !
Sarah x

[pb]

Thanks so much sarah , i know that you have been through so much.
I am on facebook and will have a look.
Are you on any medication.
Pauline x

[sjr1969]

hi, i was diagnosed with this last year. i already have been diagnosed with m.e and i do know the two are similar, well sort of under the same umbrella really as cfs too.

im afraid with all of the above, you get very little support. i have had nearly 11 years of it now and in the end you get used to the fact that apart from people you meet along the way, like on here, your pretty much told to go and get on with it. sometimes it can really wind you up, it doesnt seem right. its a very real condition, but just very little known about it. here if you want to chat either of you x
sarah x

[sarah jayne]

Im on amitryptiline which helps me sleep and 30/500 cocodamols and im been put on omeprazole again because of my bad stomach, thats all at the moment. My doctor said that some antidepressants are good for fibro but im wary of trying anymore as ive had really bad reactions in the past :( Add me on facebook if you want, you will prob see me moaning on the fibro page lol x

[JaneC]

hi, i was diagnosed with this last year. i already have been diagnosed with m.e and i do know the two are similar, well sort of under the same umbrella really as cfs too.

im afraid with all of the above, you get very little support. i have had nearly 11 years of it now and in the end you get used to the fact that apart from people you meet along the way, like on here, your pretty much told to go and get on with it. sometimes it can really wind you up, it doesnt seem right. its a very real condition, but just very little known about it. here if you want to chat either of you x
sarah x

Sarah, I have me/cfs too. A little while back I was in seeing my GP and mentioned that my weekly pattern is that after I work for two days, I then sleep for all of the next. She actually seemed to think this was quite acceptable - I certainly don't see it like that and the frustration I feel at being told you have to just live like that is enormous.

I went to see an alternative practitioner yesterday. I will have to wait and see whether the vitamins and minerals she has prescribed for me have any effect, but wow it was good to just talk to someone who seemed to understand how you felt and how horrible having this condition is. x

[MightyPC]

As I have previously posted on here, my Mrs has FM and had intra muscular injections of the Myers Cocktail at an FM clinic in London, it really worked wonders for her and she felt great. The downside is you cannot get these on the NHS you have to pay for them which is £75.00 a shot. All they have offerred on the NHS is monitoring and standard pill combination. She was given amitryptiline last week by her GP and after 2 days ended up in A&E as it totally destroyed her muscles and her arms and legs swelled up. She is still bad and can just shuffle around. She is self employed and this FM has destroyed her physically, mentally and financially. We decided last night that we are going to pay for these shots one every two weeks for eight weeks - as suggested by the FM proffessor in London. Hopefully she can get back to some normal kind of life. I will let her know about thev face book site

[anthrokid]

Heya PB plus everyone else!

I'm also a new fibro/cfs sufferer, and I'm only 19 so it's really quite horrible because I just can't do what 19 year olds are meant to be doing. Even reading a book is exhausting!

It's really hard to get a decent doctor for fibromyalgia or cfs because it's something that doesn't have a 'cure' as such and many doctors just can't be bothered with it. It's horrible to say, but it's true.

I would recommend looking for a doctor who specialises in fibromyalgia (often they know heaps about cfs too). My doctor helped me find a specialist (because she was completely honest with me and admitted that she'd never treated it before. It's only just started being recognised over here. She couldn't find anything at all wrong with me so she searched all her medical books to come up with fibro, she's such a wonderful woman).

If your doctor doesn't know of one just search around, there's bound to be a decent one. The only problem is that they often are very hard to book in with because fibro and cfs are only starting to become recognised more widely now, so there isn't enough doctors who specialise to treat all of the sufferers which sucks!

Feel free to PM me anytime you'd like (that goes for everyone) as I know stacks about all the aspects of fibro/cfs and the symptoms. I've clued myself up in every way possible. I'm very close with my doctors and have squeezed out every possible bit of info I can.

Best wishes to everyone! I know it's absolutely horrible to live with, but it can definitely be managed :)

[pb]

have had to stop diclodenic and now im in so much pain , all of my joints are hurting.
I can't cope with the pain , but gp said i can't take diclofenic because of my stomach.
Codeine and paracetamol do not help..
Im trying to tell myself that my anxiety about stopping has caused the pain , but i dont have a diagnosis -fibromyalgia or arthritis??
Waiting to see if i will get another rheumatologist appointment at the first hospital i went to but with a different doctor, if not im going to go private.
I need help with all of this..

[anthrokid]

I took amitryptiline for a bit and it worked really well for the pain, but it didn't agree with my panic attacks and caused me to have more. Affects each person differently, I wish it didn't worsen my panic attacks, it was so good for the pain. You should definitely try some yoga, yoga is amazing for your joints and muscles, really helpful. And meditation. It's really helpful. I recently did a study at uni on arthritis and fibromyalgia. Fibro is actually classified as an arthritis, but unlike other forms it doesn't cause any permanent damage to the muscles or bones/joints. Going private is definitely a good option, although I know it isn't an option for everyone, it's very costly. The public at my local hospital was terrible, and as a uni student I couldn't afford to go private. Bless my mum she's paying for me to see private doctors which are amazing in comparison. It's easier to find a good doctor because there's less patients they have to see and not so difficult to get in.

[pb]

Thanks for your replies - im really hoping that the pain will get better in time. In the past i have had joint pain that eventually went, but ive had this for six months.
Has anyone had this type of pain that did go eventually x

[anthrokid]

Mine's definitely reduced a lot, it hasn't gone completely, but some days I do not notice it which is a sign that it's going :)

[pb]

im in so much pain today , going away for a few days tomorrow aand am scared i wont be able to cope.
I phoned about a private rheumatology appointment yesterday and i can get one for next week - maybe i should do this.
In the past my joint pain has got better eventually , but this has lasted 6 months.
Im sure stopping the diclofenic has made my joints worse.but this is not a treatment for fibro so maybe i have some sort of arthritis - i just dont know.so sorry for the ramble x

[sarah jayne]

Im having a really bad flare up. Im going away for 2 weeks on the 21st, im dreading it but know that i cant let my family down. How much is it to see a private rheumo ? Can you not ask for a second opinion on the nhs ? Im going private but im still waiting for the papers to come through, im doing iy through my husbands works. My doctor mentioned a patch that i can use for pain relief, i cant remember the name though, you stick it on your body and the meds get into your blood. He doesnt want me to start it yet because hes just prescribed me antidepressants and wants to see how i go on those first. It might be worth mentioning x

[MightyPC]

Sarah Jayne, my mrs had probably one of her worst flare ups this weekend and ended up in A&E undergoing all sorts of tests and it was found that the change in her medication had a bad reaction with her FM. The NHS do not really treat FM, you will get monitored and advice, that is about it. The muscular injections that helped my mrs are called the Myers Cocktail, but these are £70 a shot. Again, you cannot get these on the NHS as they were deemed too expensive by NICE. So we are going to have to fork out £70.00 every other week privately despite both having worked all our life and paid into the system, yet the NHS will pay (with our money) for a transexual from Turkey to undergo a complete gender assignment on the basis that it is stressed with its gender. My mrs cannot even carry out daily activities including work because of FM. If you can afford, go private and go to someone that recognises FM. Good luck

[zippy]

I agree mighty pc, i have m.e and fibro and i pay private for osteopaths etc and get no treatment from the nhs. And like you say worked for 17yrs before this illness and someone from abroad can get anything done free.I have to fight for benefits and when the forms come to fill in they are in about 10 different languages.

[JaneC]

The problem is conventional medicine has next to nothing to offer us. At a time when CFS and fibromyalgia seem to be on the rise, doctors should be opening their minds to other possibilities - instead they're busy denouncing homeopathy as "witchcraft".

Junior doctors have recently succeeded in having a spell at Scotland's only NHS homeopathic hospital removed from their training programme. Things are very much going backwards rather than forwards.