holidayhutch Posted May 15, 2007 Share Posted May 15, 2007 Just wondered how many of us here have Fibromyalgia, how you cope on a day to day basis, if you have found a particular treatment or method that works best for you and if there are any local support groups:) Link to comment Share on other sites More sharing options...
steve_m Posted May 16, 2007 Share Posted May 16, 2007 Did you find it hard to be diagnosed with Firomyalgia? my mothers doctor said it doesn't exist and is a catch all term for different conditions including hypochondria. Link to comment Share on other sites More sharing options...
Titian Posted May 16, 2007 Share Posted May 16, 2007 Just wondered how many of us here have Fibromyalgia, how you cope on a day to day basis, if you have found a particular treatment or method that works best for you and if there are any local support groups:) I work with someone that suffers with it and I think the best solution is to rid yourself of stress. Anything that causes stress seems to bring on the pain, also repetitive movements. I will ask if there is a support group. Link to comment Share on other sites More sharing options...
andco Posted May 16, 2007 Share Posted May 16, 2007 Here's one link with some possible solutions. There were quite few others when I googled "Fybromyalgia so if your affected by this unpleasant condition perhaps it might be worth a look. http://www.nutracura.co.uk/products/activive.php?gclid=CMbQjpeVkowCFQrllAod8EvM6w Link to comment Share on other sites More sharing options...
schizodoor Posted May 16, 2007 Share Posted May 16, 2007 someone I know suffers with this condition. The pain is tremendous. He was undiagnosed for a number of years with doctors being very unhelpful. They'd turn him away time and time again leaving him with the impression they thought he was lying. It was very disheartening for him and he ended up in hospital on a number of occasions with debilitating pain. After nearly ten years of no support or help a new doctor started at his surgery and after a couple of visits to him he was referred on and eventually diagnosed with it, just having a name for the condition which had plagued him was a great relief. they treated him with a number of different drugs and eventually gave him pre-gabalin(excuse spelling) and an anti-spasmodic drugs (can't remember name of that one). It changed his life, he went from being on crutches and being unable to do most day to day jobs to being on no crutches and moving on with his life. It was like a miracle! He's a different person now and rarely needs to take pain killers anymore. The specialist he saw was in chesterfield called faquarson I think, he's a great doctor. Most GP's don't seem to understand the condition and pre-gabalin is apparently really expensive so not widely prescribed. It seems to have been life changing drugs and if you mention it at the doctors you may get some help from it. Link to comment Share on other sites More sharing options...
holidayhutch Posted May 16, 2007 Author Share Posted May 16, 2007 Thanks everyone, especially Schizodoor. I found myself in a similar situation to your friend. With my GP blaming everything I went to him for on my weight. I lost 11 stone and my condition was getting worse so I basically said to him - "That blows your theory, cos howcome I am worse now after losing the weight you said was a problem?" He referred me to a rheumatologist and I was diagnosed more or less straight away. I was put on Tramadol and Amitryptilene which had no effect whatsoever and they have basically said my only option left would be morphine because of the extent of the pain, but seeing as I am trying to conceive that it is not an option at the moment. He therefore referred me for a homeopathy trial that I am 5 months into, there are certain benefits I am feeling at the moment, but I really dont think people understand the daily struggle it is for people with this condition. Simple things like brushing your hair and even being able to stand up to get out of bed can be impossible some days and yet on others you seem to have boundless energy. It is the same though I guess with most unseen illnesses, if you look o.k it is hard for people to see or understand what is wrong. I am glad your friend is getting good treatment and some benefit from it. Link to comment Share on other sites More sharing options...
steve_m Posted May 16, 2007 Share Posted May 16, 2007 Amitryptilene isn't it an anti deppresent? Link to comment Share on other sites More sharing options...
schizodoor Posted May 16, 2007 Share Posted May 16, 2007 Thanks everyone, especially Schizodoor. I found myself in a similar situation to your friend. With my GP blaming everything I went to him for on my weight. I lost 11 stone and my condition was getting worse so I basically said to him - "That blows your theory, cos howcome I am worse now after losing the weight you said was a problem?" He referred me to a rheumatologist and I was diagnosed more or less straight away. I was put on Tramadol and Amitryptilene which had no effect whatsoever and they have basically said my only option left would be morphine because of the extent of the pain, but seeing as I am trying to conceive that it is not an option at the moment. He therefore referred me for a homeopathy trial that I am 5 months into, there are certain benefits I am feeling at the moment, but I really dont think people understand the daily struggle it is for people with this condition. Simple things like brushing your hair and even being able to stand up to get out of bed can be impossible some days and yet on others you seem to have boundless energy. It is the same though I guess with most unseen illnesses, if you look o.k it is hard for people to see or understand what is wrong. I am glad your friend is getting good treatment and some benefit from it. LOL at the looking OK bit. It used to be a standing joke for him. People would say 'you look well' and he'd be having a really bad day! he tried Amitryptilene too, didn't help him (it is an anti-depresant but has been proven to help with pain in some cases). When he had relatively pain free times he'd rush around trying to get things done before the next bout but invariably this would take its toll and he'd suffer more when it hit. If you can get into chesterfield pain clinic or try the pregabalin or gabapentin I'm sure it would help immensely. Its an awful condition that is mis-diagnosed so often and not believed by so many as in steve-m's posts. Seeing someone on a bad day with fibromyalgia shows you that it just can't be faked or hypochondria. My friend has had to fight his condition for years and only recently got the help he deserves so he can have some semblance of a 'normal' life. I'd really appreciate knowing how you get on. What sort of day are you having today? Link to comment Share on other sites More sharing options...
drinkingman Posted May 16, 2007 Share Posted May 16, 2007 My OH was diagnosed with FM in mid 1997 (eventually). Saw someone at Nether Edge, I think. She went through a bad time with it for two or three years, but eventually improved. She still has days when she feels "like I've been hit by a tractor" and can't do much. Whilst amitryptilene can help, it turns some people into "zombies" and makes life worse. If I take it (for diabetic neuropathy) I'm half asleep for most of the following day, though some people find that hard to tell!! What concerns me on reading these posts is the fact that obviously some GP's still have the same attitude we found ten years ago. Some GP's still think FM is "all in the mind". It most definitely is not the case. A quick Google will soon find many people with their own horror stories. Anyone with this condition needs sympathy, support and proper treatment. I do agree that stress seems to make it worse. Link to comment Share on other sites More sharing options...
Bonny Posted May 16, 2007 Share Posted May 16, 2007 I too have a friend with Fibromyalgia, it was ages before she was diagnosed too and I think she was treated for depression for ages first. Link to comment Share on other sites More sharing options...
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