what other medicla help is there?

[fran257]

I have had Fibromyalgia for 4 years now and intially was given paracetoamol and Codeine Phospahte as the medication for the pain.  My pain gets worse on walking or sitting or even lying down!  I dont take the codeine phosphate too much as I get terribly constipated  causing more problems] and now am developing the same sharp "electric like" pains in my ring finger on my left hand, so sharp at times I can drop whatever I am holding.  These are the same type and intensity I get in my hips, thighs and sometimes upper arms and toes and feet.  I asked my oncology specialist at my check up if i could be referred to the pain clinic and she said no as the only alternative in the next step is morphine!? Surely this cannot be right?  I have asked my GP to refer me and they wont either, the pain is causing me lack of sleep and interferes with my normal life in every way, living alone its a nightmare some days trying to cope, can you help?

[PlateletGal]

Hi ! What I tell people is that if your current treatment is not working, then to keep searching for answers. There are several fibro/CFS experts who have been keeping up to date with the latest research on fibromyalgia and CFS. These physicians also post their treatment recommendations online and they normally do not prescribe many of the prescriptions that many other physicians are prescribing. So my advice is start looking to the experts and consider contacting them or trying their recommendations. I do know that some supplements, such as magnesium and B12, are very important for both fibromyalgia and CFS patients.

http://www.medhelp.org/health_pages/Fibromyalgia/Treatments-for-Fibromyalgia-/show/454?cid=39

[hazymazy]

Hi I agree with your comments. I also have fibromyagia although I hate to admit it  even to myself for some reason, maybe my pride. I was SO healthy and active before. I tried for years to get an explanation and also think its a good idea to investigate information yourself. I also feel that the medical profession are gaining more knowledge. I will try the magnesium and B12 all advice is gratefully received.

[fran257]

Thank you for the advice and I will surely follow that up and do some more research online.  I am in the UK and over here they seem to want to crack a nut with a sledgehammer!!  I have got an appointment with a neurologist on 7th September and they are going to do tests on my nerve responses.  I find my pain is more like a nerve pain than a muscle one, so fingers crossed some help may be forthcoming when they get the results.
Hazymazy, like you I was an extremely active woman and have found it hard to come to terms with my reduction in ability to walk far etc.  Its like mourning for the loss of your previous life, but now I have come to terms with it and just need to get the pain under control and move on in my life.

[geertieman]

I'm sorry you're in agony. I'm currently on 80 mg oxycontin twice a day, enough for a terminally ill patient, I'm a nurse, and I still have bad days, like now. Also Diazepam, sleeping pills, antidepressants, and ritalin, otherwise I'm more dead than alive. My team explained the "way" as a physical reaction to years of excessive stress. The problem is I want to work, deskjob, but in Belgium if you're ill, you can't work, study, nothing. I got lucky I ended up with the right team of specialits, normallly seen it's treated as a psychiatric illness, excersise and cognitive therapy. Some people even get sectioned for this. The reason: too many psychologists and therapists. Try the morfine, if you use it to dull the pain, and you get the right dosage, there is little chance of constantly having to up the dosage. I hope you find a way to have some sort of a life, and no a dotor can be wrong

[hazymazy]

Hope your appointment with the neurologist was helpful. Please let me know. I'm from the uk also and feel at times that you have to try to heal yourself as some doctors don't fully understand fibromyalgia. As I have not been referred to anyone else I guess I wont know what a specialist opinion about myself would be but I so wish my doctor would refer me. I think its all down to money and cut backs. I think a specialist would at least advice me and give helpful meds. Basically frbromyalgia is life changing and the pain is debilitating and distressing and now I have to get on with it. My pain meds are rubbish but lve tried everything he has given me and now I'm sensitive and itch if I so much as take one. I am having homoeopathy although its expensive Im giving it ago. Had 4 days almost pain free in a row this year but its all started up again. Like yourself fran257 Im learning to adapt (through gritted teeth lol) and except the changes in my life style. Thank you for your advice Im now on the B12 and magnesium.. Good luck to everyone.

[fran257]

Well the appointment and tests showed I have a trapped nerve in my elbow, hence the "electric" shock pains in my fingers.  I now have to discuss this with my GP next week but they have told me at the neurological clinic the only option is to see a surgeon to see if he can help.

I too don't get on well with the medication, the strong stuff makes me constipated [I hate when it does that] and it also tells me I shouldn't drive if I feel drowsy, well how am I supposed to get to my hospital appointments etc?  So I hardly ever take them and have to rely on poor old paracetomol, not that it does much good either.

I dont get any pain free days as soon as I am walking about the pain down the side of my hips starts up and the longer I walk the more severe the pain gets!  The pain in my arms and hands does come and go, apart from the "electric shock pain"  It is debilitating as I now cannot do my knitting or crosstitch which I love and used to do to try and take my mind off the pains. I also find the fatigue does come and go but it is lasting longer when it comes on now.

On the days I feel I can cope my motto is "keep taking the pills and smiling" but most days I feel its all too much to cope with, but the alternative is not something I want to face just yet LOL

Will let you know what my GP says.
Take care
Fran

[hazymazy]

I really feel for you. Its not easy when your in pain all the time and if your like me look so well. People can think your fine but if only they really new. I'm lucky in the respect I have a partner and would be lost all round without him. We used to go coastal path walking together and now that part of my life is a fantasy.
Really know what you mean about the hip pain. I don't have electric shock pains although my sister was told by her consultant that she has fibromyagia signs and she has shooting pains stabbing pain. I have burning pain as if I've been scrubbed with a wire wool in my flesh on especially my hips and these awful lumps and painful tissue masses which my doctor says are part of fibro. I also have to have hip resurfacing operations and its a worry at 42. This isn't because of fibro but of a hip joint deformity. I don't know if its safe for a surgeon to cut through fibro tissue and Im really worried. My surgeon said he wont be able to get rid of all my pain so is it better to stay as I am for now or take a chance and heal part of me with fingers crossed? This is why I wanted to see a consultant about the fibro because they could answer this. I also get numb hands and arms as if Ive slept on them. Also weak arms and legs like jelly again my doctor says its fibromyalgia. When I cant sleep which is so often I take Valerian and this helps for a day or two then wont work again for a while but its something. Do you get edema as well. I do especially in legs/feet. Look forward to you reply. thankyou.

[fran257]

I dont get odema in my legs/feet like you, What I have there is severe cramps and restless leg syndrome.  I am on quinine every night for the cramps as they are horrendous and I scream with them, but now I am getting cramps in my upper right abdomen, I just have to lean forward for that to be triggered and I am paralysed by the pain for about 5 mins before I then can feel the muscle or whatever it is relaxing after the cramp is over then I know the pain will go.  My GP doesnt seem bothered about that!

I do not have a partner and wish somedays I did have because some days its so hard to carry on, as I not only have fibro but several other health problems for which I have hospital appointments etc.

As for the operation go ahead and have it.  I had 3 last year!!  2 for breast cancer and one for a cyst [as it fortunately turned out to be] on my vagina.

You know you have right to ask to be referred to a specialist?  You do, you need to be referred to Rheumatology, thats the place I was diagnosed with my Fibro.  They didnt help me in anyway though, just said unfortunately there isnt anything they can do!  I have never been back because they have not asked to see me again!!  Dont know if I have just been unlucky in that respect, but go ahead and ask to be referred, maybe you will get more help/info.  Let me know if or what happens.

Its true what you say about people thinking there is nothing wrong with you.  I have been told several times that I look wonderful and so well, inside I am screaming with pain.  I have had such bad pains some days I have felt sick and wanted to vomit.  Despite this no Dr will refer me to a pain management clinic to see if different meds would help.  This is despite the fact that 3 years ago I saw a consultant there and he recommended these meds I have now and said if that didnt work he would be happy to see me again and I cant go straight to the clinic, you have to get your GP to refer you!! SCREAM!! LOL

I just think a lot of the time these Dr's just cannot be bothered with me, and other times they are brilliant, I think its probably because some of them are not really believing there is such a thing as fibro?  I dont know, thats just my feeling of my experiences the last 4 years.
Stay strong. I know its hard on really bad days, but count your blessings, you have someone to support you.