i have had fybro for a few yrs now. I take amitriptyline...

I have fybromyalgia ,i find it very difficult to cope with as i have also sufered from depression for a number of years,Ihave most of the pain in my neck and back, also having pains going all through my body,My arms feel as if i have lead weights on the end of them ,I feel tired lethargic, completely out of energy all the time, when and if i get a good day, i try to catch up with jobs around the house,but i end up feeling worse for days after. At the moment i am feeling so low ,my doctor has also given me amitryptylene,as i feel at the end ,climbing up the walls in pain,not knowing where to sit,lie ,stand or do anything.I know by reading through the information given to me ,that this is something that we have to learn to cope with,but to be honest i'm not finding this easy.

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I suffer from Fibromyalgia. I have tried many things over the 10 years since my diagnosis. The first thing I found that helped for a while was SAM-e. It helped with the 'brain fog' & tiredness, however it made the muscle spasm & pain worse, and further disturbed my sleep patterns. I did further research on dosage and discovered I was probably experiencing more negative effects due to too high a dose. I then decreased dose to 200mg a day. This improved things for a while, but eventually I could no longer afford to buy the drug from over sea’s. Sadly SAM-e is not available in the uk. It is expensive, and although eventually my GP agreed to give me a private prescription, that was going to be more expensive than an internet order.

I also found that taking Claratin, available over the counter, (or as NeoClaratin on prescription) I had a reduction in the severity of the daily muscular pains. This treatment was recommended by the Fibromyalgia Association. I have continued with this for two and a half years now, but it doesn't help me with the daily tiredness, and lack of clarity of brain function.

However, I recently heard a programme on radio 4 mentioning Provigil. I have just managed to acquire some and started self-administered trials. So far it seems very sucessful. I would like this drug called Modafinil in the UK to be available as a treatment for Fibromyalgia.

The other things I ought to mention for people reading this that have Fibro... I have found drinking more water has helped enormously with shoulder and knee pain, and generally with muscle pain. I have found muscle spasm at its worst during PMS times, or to the point of paralysis when I had a hormone implant coil Mirana. As soon as it was removed month after month I got better & better. I have also found I am cows dairy sensitive, and if I eat milk products it increases the tiredness to narcoleptic proportions. If I avoid all milk & milk related products then the tiredness is unpleasant but manageable, although I cannot work currently due to tiredness, hence my looking for solutions to the problem.

I hope you find a solution if you are a Fibromyalgia sufferer. I hope that something I have been through and / or written may help you find a better quality of life. Hope always, Joy.

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I can sympathise very much with this, I had the same problems with lack of support from the doctors, was treated like a hypocondriac and was very frustrated. My pain was also in my back, hands and hips, as well as very painful knees and feet. I have only just been diagnosed a few weeks ago after 2 years of frustration, and the specialist at the rheumatology dept at the hospital diagnosed me and put me on amytriptyline. I am having very dry mouth, problems passing water and blurred vision on these but will persevere with them and see what happens. I am constantly tired and am looking for a part-time job to give more time for myself as I am so exhausted and the pain seems to be worse lately. I used a heat spray on my arm the other night when it was very painful, as I cannot take anti-inflammatory pain killers because I have irritable bowel also, and had a good result with the spray making my arm improve by 80% overnight! So - for anyone reading this try it and see if it helps!

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I think Doctors are not experienced enough to give any advice on Fibro. I have not been happy with one doctor out of the 8 i have seen. They have all told me it is only muscle pain. So what are the other 50 symptoms i have? I have give up on the drugs they dont touch the pain the anti-depresents mong me out and strong pain killers i can not take. I feel as if i am in my own little bubble im just waiting for the right Doctor to bust it and help me. I going to be in it for a long while.

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My doctor was unhelpful and sid that he could not do anything for me and said it was tendonitis. So I boycott him ans see someone else who is slightly better. I have been diagnosed with Fibro (2 yrs ago) and I have gone the alternative route rather than anti-epileptic drugs, muscle relaxant or antidepressant which causes more problems.....Currently I am taking Magnesium for muscle spasm, Ginseng, Rhadiola, NDHA (energy) Vitamin B(nervous system) complex Fish oil or sardines (brain fog) zinc (immunity) Gaba, Kava Kava and low level pains killers. Changing my diet, adding supplement and cutting stress specially from family and people who take have definately helped. Apparently alkolising one's system si supposoed to do the trick.. I'm also a hypnotherapist and psychotherapist so I can use those tool for analgesia and relaxation...

I hope if you are suffering with fibro seek alternatives rather than take the drugs that GP prefer to had out since they get a monetary incentive everytime they write out a prescription.

Chika

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Earlier this year i was diagnosed with FMS and i found it very difficult to come to terms with as I am 29 years of age and have suffered for only 3 years but they've been long ones! It started in my hands and was thought to be RSI, then Carpal Tunnel Syndrome and then they just kind of shrugged and said 'i don't know'! I've had numerous tests and had to give up my job as i simply couldn't do it effectively anymore.

I've had amitriptyline and found it very harsh giving acute stomach pains to which i instantly stopped taking. I went back to the GP and the current medication is co-dydramol and ibuprofen. These do not seem to touch the pain much if at all and am due to go back to the GP for advice. I am also seeing a homeopathist who is extremely helpful even though finding an alternative is proving somewhat difficult. Fingers crossed he'll get there in the end!

The worse thing is that i'm studying at university and have just started my third year. Today was my first day back and I had to leave as was in so much pain that i felt like quitting; Simply due to brain fog, tip-of-the tongue syndrome, limited concentration, tiredness and of course intense pain, to name but a few! I'm not going to leave but am asking for help.

The best thing i have found so far is to attend a pain management clinic. You do have a number of "professionals" to help you, albeit ignorance is bliss, but more importantly the people you meet on the course are a god send and a couple of us have stayed in touch which has been enormous help when you reach the end of your tether or just need someone to talk to that understands completely. Other friends mean well but they have no real idea and i hope that they never find out either!

Another thing to admit defeat to in time, is to apply for a blue badge as walking and getting out of a car can be difficult, not to mention sheer exhaustion, and it will prove enormously helpful. I haven't managed to admit that i need one yet but am leaning towards it as the days go by!

Don't be afraid to ask for help either, if you can bear it, though admitting defeat is very difficult.

I hope that the good days outweight the bad 8)

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Hi i read your post i have been diagnosed with fms recently but have had ongoing pain for over two years, i have a sister with fibro so i knew about it already, I have a sister with rhuemo too, so they had to rule that out, i had nerve studies done, they showed nothing, as did the blood tests, i was taking x3 amitrytlyne tabs per night but these realy knocked me out and made me more tired. My GP was supportive and i now take gabapentine X 3 but i cut to 2 a day one am and 1 pm, and take naproxen for the muscle pain x2 a day. I have bad headaches and IBS which i take colphermin and actimel daily for. I have been referred to a local pain clinic at the hospital in Leicester to see if acupunture might be helpful, and maybe to try the injections which last 3 months to help with the ache in my side back shoulders and neck.

Hope this helps... sorry about the spelling

Hi. if its any help I have had Fibro for 17years although only recently diagnosed. The good news is it doesn't kill us and you will have better days, enjoy them, and think of the bad ones as rainy days. The hardest thing for me is that other people do not understand and I would love to go dancing, horse riding, play sport etc. etc. and I have to smile sweetly and decline and I am so jealous. Sometimes I just wish I could swap bodies to shut them up and for me to have a ball.

I think its caused by toxins and try only to eat fresh foods. drink plenty of water and avoid cows milk. Good luck.