Fibromyalgia Syndrome

Hi all,

Thanks for the hug Doris and it needs to be gentle just now haha. My doctor says she cannot prescribe any more drugs for me as I have tried them all and I just keep getting bad reactions to them, I just have t learn to cope with pain. I am in the process of using a herb called diatomaceous earth, to early to know if this is gonna benefit me in any way, a lot of F/M ers are swearing by it and say it does help, it is good for my dog as well lol. Alternative therapy is ok, but it costs money and there are a lot of charlitans out there. I am finding it is all down to trial and error, I havn't came across anything that helps yet and I have to understand that there is no cure for F/M and all we can do is find stuff that can help decrease pain in some way.

Hi, I have suspected fibromyalgia, runs in family and im showing "classic symptoms" getting bloods taken on Friday) I was just wanting to know what everyone uses to keep themselves from feeling tired, I already have coffee, energy drink (and occasionally pro plus) I have also started taking vitamin B6, didn't seem to do much but maybe because its 1st day.

Any ideas would be helpful.

hi Ginny, for me I have tried every vitamin, health drink under the sun, anything that I think would give me energy, but I am afraid nothing worked the pain just keeps on wiping me out even tho I do not feel pain at the time I think it is the constant pulsing of whatever is pulsing that wipes me out. Try pacing yourself and find a comfort zone that suits you, it is not easy as when I got good days I would do more, I am in the mindset not to do that anymore as it disrupts routine, find your comfort zone and stick to it even though you feel you could do more that helps I have found.

I am a always on the go person, I don't really have time to "chill a bit" we'll not during day . . . Okay today I did but that's cause I'm on a 2 week hols from work . But usually I am a busy person and when I do get sat down its usually 8-8.30pm and that's when I get most sore, got my amitriptyline for that though. I am a big caffeine addict, a,ways felt I needed the energy, thought it was I was a busy person but I guess it's a symptom of fibro, but noticed it hasn't been working, and well hat really sucks. I will keep going with the vitamin B6 and see how I get on with it

Thanks though

Hey there, Ginny,

I find yoga really helpful, my muscles feel relaxed and my backache is gone for 2-3 days after a session. Swimming does wonders, too. But I think that what really helps me is pacing my life more carefully. I've adjusted my work schedule, my after-hour activities, even my place so that it's less demanding, better organized and more gentle to my aching body. And when someone wants too much from me, I say NO!

Good luck and gentle hugs!

Hi, don't think I'm a yoga person, I do however love swimming, went yesterday actually lol. I will try pacing life however I don't thinks will happen too soon. I feel if I start doing that I will weaken myself

I didn't mean to be rude, what I ment was that if I slow myself down instead of carrying on as usual I don't think I will handle it aswell when the pain gets worse, because like the dr says I am only in the early stages of fibro pain mp by looks of it and that it could get worse, I am a positive person and I am hoping it will help me

Hi Ginny, I just like to give pointers and hopefully help, I would let your employer know about FMS and give them leaflets to read, loads of info on the net. Cause if you do start to get bad with it your employers might be less than understanding, I know some who ar in employment and have been very lucky to have understanding bosses and colleagues who show compassion towards them when the going gets rough.

I am just waiting for my local pool to open up and start some swimming again see if that helps, that's if I don't drown first lol

I may do that, may have to print stuff off as I've never seen a leaflet on it. I don't think my family quite understand how sore I am i always power through it during day however when everyone is in bed i am downstairs lying on vouch and really cna hetting up as i feel loke i have weights all over my ody. I think they think I'm acting it. . . . Aaaaarh.

Btw swimming is amazing. I never had much pain that night

Hi Guys & Girls,

The names Neil and I have been diagnosed by my great GP with FM. I am a 44 year old guy who has been suffering for more years than I care to remember. The latest problems I am having is a kind of jerky-movement on my right hand, often like a repeat of a single finger movement. Got to move my hand away from the keyboard or phone as soon as I have pressed the key, otherwise it repeats..... This has already happened more than a dozen times since I started typing this. I also have the most acute hot-knife-like-stabbing-pain in my right shoulder/spinal area. Now another GP in my practice is trying Acupuncture, just to see if it helps. In under 7 days I will have an appointment with the nearest NHS Pain Clinic, up in Peterborough, so its only around 45 minutes drive, fingers crossed. I am trying all kinds of medications, but the only real help - at the moment anyhow - is Paracetamol, Voltarol Emulgel, and a whole heap of Codeine Phosphate. The Codeine seems to bring the pain down to a manageable / tolerate-able level, however this is one of my GP's main reason for a referral to the Pain Clinic, as I seem to be Codeine-Dependent, not Codeine-Addictive.

# my GP keeps on stressing to me that I am not addicted to Codeine, I am dependent on it, to the effect of her prescribing me 780mg per day, which I admit seems excessive but she understands how I feel.

Anyhow enough of me ranting on, its just gone 4:15 in the morning of another terrible sleepless night, as my legs are on fire, my calf-muscles are doing the London marathon, and my back is so tense its like being in a straight-jacket (not that I have ever been in one it just feels like I think one would).

Right, time to end my first post, feel free to comment or post or otherwise.....

There I go again, oh that's another thing, my wife says I chatter ten-to-the-dozen, oh well onwards-and-upwards.

Bye for now,

Neil.

Hello all,

I hope you are all doing well( as much as you can be) I was just wanting to ask a quick question.

I have an eight year old son who loves nothing better than sitting on me, jumping on me etc but I have excruciating pain when someone even lightly touches me in certain places and I am really hoping for some tips, information anything that I might be able to make it less painful than it is at the moment. At the moment i am hoping he will grow out of wanting to wrestle with me at any chance he gets but in the mean time I could do with any of your suggestions please.

Thank you.

Anne.xx

Hi everyone I have just joined this group, I am 30 years old single parent to a 4 year old. I got diagnosed with fibromyalgia at the age of 18, I am not on any medication now and back to working full time it's been a long and painful road but I am managing my condition well. I don't get a lot of pain anymore just a flare up couple of times a month that last 24 hours my main problems are sensitivity with things I can't stands thing too loud and get easily confused especially if there is a large gathering and everyone is talking, I have to walk out which makes people believe I am being ignorant, I have dealt with a lot of prejudice mainly within in my family who couldn't understand why I would sleep all day and still be exhausted they just assumed I was lazy I used to take amytriptalin at night and a fluoxetine in a morning to wake me up.but after being on them for so long I decided enough was enough so I had a strict routine of when I went to sleep and when I got up.I still keep some amatryptaline in the cupboard in case I have a flare up. My main concern at the moment is I have just been diagnosed with another condition called hidradenitis supporativa (which means I suffer from reoccurring abscesses and boils) I have no idea if this will affect my fibro or if one will trigger the other I guess it's just a waiting game as I can't find anything to say if it does or doesn't. If anyone can find anything out or has any information on this condition I would love to hear from you, my motto in life is keep going I find if I give up mentally then my body gives up I know it's hard it's took years of practice but keep smiling and keep going 

Hi. I have just been diagnosed with with fms after a year of he'll. Can you tell me how you are getting on generally with day to day things now....

It has literally floored me..

Thanks 

Graham

Hi everyone

I have only just been diagnosed with fibromyalgia, although I believe I have had these symptoms for a few years, just not as bad! I hurt my back at the begining of January and was in horiffic pain, I was encouraged to see a chiropractor. As things were not progressing pain wise, he started to ask questions and probe, it was he who suggested I may have this. I have visited the Dr today, and she thinks this is possible,although doen't want to say it....yet (her words).

I can't believe how I have not realised that something was not right before, I have had this awful pain, headaches, stiffness, foggy feeling for so long I just thought it was 'normal'! When I looked at the symptoms, I have so many, but refused to accept I was anything more than 'under the weather'.

I have a disabled husband who is in severe pain, rheumatoid athritis, osteo and 3 different lung diseases and compared to him,well, I just didn't want to winge, and had to keep on doing things, even though I was exhausted, I just thought that was why!

In a way I am relieved, I am not just imagining all these things, they are real (the pains certinally are). Stress seems to be a major contributor for me, although I genuinely don't feel I am sressed. I lost my voice for 7 months at the end last year and 2 years previously for 6 months, has anyone else had this? 

I have so many questions, but it is brilliant to find this forum and know there are other people out there who like me are trying to understand and live with this!