Hi, I've had fibromyalgia for around 20yrs, I must have been one of the first to get a diagnosis. I would like to know if anyone else gets problems

Hi Shelagh,

First time I have replied to a forum, I was diagnosed with Fibromyalgia a couple of months ago after years of pain particularly at night with severe cramps/pain in lower legs/ feet and toes the pain can be excruating and cause me to scream out it can also last for hours, stretching does not help only muscle relaxants help.

I have every sympathy for you because unless you experience this pain know one can understand it!

Hi All,

I am the same right hand side is worse than left, I get a lot of pins and needles, numbness everywhere and weakness. I have tried evry tablet under the sun and I cannot find anything that works for me as they all make me feel worse. I have just joined a help group so hopefully I will get somewhere with their help.

Try to be positive James

I think I've found something that helps the cramps, tonic water, could be coincidence but I've not had a serious cramp since I've been drinking it. It's worth a try, it contains quinine which is prescribed for leg cramps although it is in very small dose. Anyone else fancy trying it?

Sorry, that was very rude of me! It does get easier I think or you just learn ways of making life work for you. I work full time but I am thinking of either dropping some hours or retiring from this job and finding something less stressful. Does anyone else work, if so how do you cope with the long hours?

you are very lucky being able to work shelagh, I would love to work but I don't think anyone would employ me as I would have to many days off and would find it very hard to balance. I am thinking of trying to work from home but not sure how to go about it or where to look, that way I could pace myself better and rest when I need to rest.

I work in the NHS, they are very understanding and I have a lot of support, not sure anyone else would employ me. When I started here 5yrs ago I had been told by my gp that there was no such thing as fm and if there was it would have burned off by now!! I changed gp and got referred to Rheumatology where I was told what a load of rubbish that was. Now I see Fiona every 6 months, work have put in various measures to make life easier but I do find full time a bit much, I'm either here or asleep I don't have a social life in any way. It does help to work if you can find something you could do, I struggle every day but the difference it makes to my life is worth it.

I have other things going on with me as well, I have had a eurostomy op where I get regular infections, so it is a bit of a nightmare sometimes trying to work out if I have an infection or F/M flare up. Trying to pace myself I find very hard to do as when I have a good spell (which is not very often) I tend to do to much and then crash my body again. I have my dog and a little bit of garden, I also like to meditate, I was doing a little bit of yoga exercise called the 5 Tibetan rites, I havn't managed for the past 6 weeks so when I am ready again I will have to start at the beginning and work my way back up again. Finding someone who could employ me would be very difficult. Do you find that noise irritates can cause confusion and you feel like passing out?

I have osteo and rheumatoid arthritis and other problems with my spine. What do you take for the pain? I take dihydrocodiene, amytriptoline, paracetamol and wear morphine patches. After a total knee replacement I took morphine for a few months too. Have you tried gabapentin? A lot of people have great success with it, unfortunately my blood pressure dropped dramatically so I couldn't take it, it's worth asking about if you haven't tried it yet.

I have tried every tablet that could be offered to me, they only worked short term and then started making me feel worse long term. So now all I can take is ibuprofen and paracetomels. Gabapentin was brill to start with but after a while they made me feel really ill so I had to come off of them. 4 major operations to my lower back brought F/M on. I am now looking at alternative therapy, I meditate anyway but there are other methods as well, they are expensive, and it looks like I don't have much choice if I want to get it under control, it is all down to stress. A lot of symptoms of F/M are the same as B12 vitamin deficiency, it is maybe worth getting that checked out just ask your G.P also check it out on this site. The injections I get are every three months they havn't made much of a difference yet but long term it might just work out.

I've had all the tests, scans, X-rays possible, I get bloods done every 6 months when I see the rheumatologist. Waiting for the results of the MRI I had last Friday. That was to check how the damage to my neck is going, I manage my symptoms myself most of the time. I rest when I need to exercise when I can mainly walking the dogs, I love swimming but not allowed due to the neck damage. I am going to start horse riding again when I can, the consultant said it was fine as long as I'm careful and will be good mentally as we'll as physically. At the minute it's a dream but I will do it one day, there's a riding school nearby and lots of trekking centres, I may even buy my own horse one day.

My doctor said to me the other day that that was it everything that could alleviate the pain has been tried on me and that there isn't much else she could do for me, it is not the Drs fault as they can only use the tools they are given, but I still can't help feel that they are just quite happy to push pills.

Anyway, I have invested in a meditation system called the Silva life system, I am on my 6th day of the programme and I am starting to feel more happy with myself, the pain is still there and I am coping a bit better, my confidence is starting to pick up slowly. There is another system that I have looked into with a woman called Elaine Thompson, google her name and you will see what she is all about, she lives in Somerset. I am of the opinion now that nothing ventured nothing gained. Hold on to your dreams Shelagh as they are important.

There is a drug that the rest of the world uses very successfully but isn't approved for fm here yet. I saw a Polish locus a year or so ago who told me about it, he asked if he could prescribe it but they turned him down! I believe it's used in high doses for cancer patients but we would need a fraction of the dose. Have you been to see a rheumatologist or pain specialist yet? If not your gp hasn't done their job properly yet, the pain specialist here uses acupuncture very successfully and the rheumatologist keeps in touch with the latest treatments plus she /he is someone who understands what you are going through. Have you got morphine patches? They help enormously, when I forget to replace mine I know just how much pain they get rid of. They are Butrans patches if you haven't tried them yet ask your gp, the rheumatologist told my gp to prescribe them. They are a controlled drug so you may need to go down the route of rheumatologist first.

(Should be locum not locus, stupid predictive text)

My husband is 17 years younger than me I tend to keep up with him as much as possible and refuse to let things get me down most of the time but do have blips where I am thoroughly fed up and miserable. Spending today in bed recovering from a stressful week, it's the only way I can cope. Tomorrow will be half a day in bed and half in the garden if it's nice or house work if it isn't it's all about balancing the week. I'm better as the day goes on so can work 12 to 8 if I want to, I do on a Friday, it makes life easier.

Take care and don't give in to it!

thanks Shelagh, I think that drug is called Sativex apparently it is waiting to be liscenced, because it is hemp based there is a problem with it, with the government. I had a pain clinic dr but she retired and I have had to re-apply just my luck as she was really good. A few years ago I was at the pain clinic but they were really unsympathetic, maybe their attitude is starting to change. I have heard of the butran patches but I will have to wait for the pain clinic to subscribe them as my dr is not qualified to subscribe them.

yesterday I was really ill and didn't know what to do, I have a friend who smokes cannabis, so I chewed a small amount and within minutes I started to feel better, I then had some more later and I felt really good, not stoned or anything like that I just felt better and the symptoms just melted away.

The problem here is, that it is illegal(why a natural plant can be illegal I don't know).hemp could solve lots of the worlds illnesses including some cancers. But there is no profit in hemp as it is easily grown and cultivated, you can also make oil, clothes, plastics etc etc it would be a very green way of looking after our planet and our healths as emissions from hemp is clean energy.

it is all just a working progress with loads of research on our part, though I get the impression that the Drs ain't to chuffed about it.

the secret is to enjoy yourself on good days, not overdo it and the jobs that need doing will eventually get done, don't stress over them. lol

I'm with you on that! My dad died in July and has left a decent sum of money, once it's cleared I'm getting a motorhome so we can take any time we get together on the road. We can stop where and when we want, staying in this country but that's what we want anyway.

I used to work with drug addicts, one of them told me the best way to take pot was to put some oil, vegetable, on a spoon, crumble the pot into the oil then warm it over a flame. When it's all mixed together put it in a live yoghurt and mix well. It helps digest it quicker and the yoghurts good for you too. I haven't used it for a few years, we don' t have a supplier any more, but a friend is going to sort some for me. It should be available on prescription, my gp said he would prescribe it if he could. If drugs were legalised crime figures would drop and there would be less addicts because the thrill of breaking the law would be gone. Just my opinion I could be wrong!

I do overdo it on good days, every time I think "mustn't overdo it" but I always do! I don't worry about jobs that don't get done at home there are better things to worry about and to do.

Than you for the tip on how to digest pot, my wife was on about that but couldn't remember how it was done, I dry out leaves and take it that way, is there a difference between solid or leaf and does one work better than the other.

Hey great minds think alike, getting a campervan is also one of my dreams where I would be able to stop when I want and rest and still enjoy nature at the same time.