Life with fibromyalgia

Hi i'm new to this. I was only diagnosed  with fibro a few months ago but the doctor thinks i may have had this for a while now. How have you guys found alternative medication? 

Hi guys, I am new to the site I suffer with chronic back pain, restless legs, plus a load of other stuff too many to mention! I have already had 3 operations on my back and unto 3 years ago my back was relatively ok or should I say as well as could be after having the spinal fusion in the lumber region, I had suffered a little bit with Restless legs but I could always cope with it but now I just wish I could chop my flipping legs off!!! I also have broken sleep all night long its so bad I now have to have my own bedroom so my husband can get some sleep.  I was first prescribed Gabapentin but this didn't work at all for me then the GP prescribed ropinarol I started with 1 at night and it seem to help when it got into my system I was sleeping better, but over time my restless legs have even started during the day I am so fed up. I am now on 4 tabs at night plus all the other stuff but still feel to be deteriorating I have also noticed my arms have started with involuntary movements oh the joy!!!!! I feel my whole body aches all day long and after a night in bed tossing and turning I am stiff as a board which I find very hard to understand as my legs never stop so its not as though I am stuck in one position. Rant over, what I really want to know is this also part of fibromyalgia and if so why does my GP not recognise it?

Thanks for listening 

Gillian

Hi, I'm Patsy and I was diagnosed 10 months ago.  the fibromyalgia team at my local hospital think it was triggered by multiple major operations when I lost most of my intestines.  I infuse overnight 5 x 2 litre bags of electrolytes each week.  I now have that condition under control.  my many doctors tell me I have been through the mill but I tell them that fibromyalgia reduces my quality of life far more than short bowel syndrome.  I get loads of sympathy for the intestinal failure but no one understands how devastating fibromyalgia is.  My major problem if weakness and fatigue.  I wake up tired, I am totally spent by mid to late afternoon and have to go to bed for at least an hour to recharge.  ive given up driving for more than an hour as I get too tired and become dangerous.  I'm starting Physio with a specialist in Fibromyalgia next week with the objective of building up my strength and stamina.  Any tips are very welcome.

Hi.

I'm also new here and have already found some of the comments very helpful in reassuring me that I'm not losing my sanity. I was diagnosed with Fibromyalgia two years ago. My partner had major back surgery, and shortly after I had a very bad attack of diverticulitis and had to have emergency surgery. I had a temporary colostomy and I was waiting to have a second operation to reverse this when my partner died very suddenly. The stress seemed to worsen symptoms that I had been suffering for a number of years. 

I find the constant tiredness a major frustration. Just dusting the lounge wears me out to the point where I need to lie down and rest for an hour. Walking short distances results in incredible pain in my hips, upper legs and most of the length of my spine. I regularly suffer from restless leg syndrome, but at times I get the same feeling in my arms. There have been times when I've wondered whether my symptoms are real or just psychological, so it's a real help to know that others are experiencing the same things, even if there is not a lot that can be done about it.

Idomeneo, this is not a psychological illness so don't believe that.  Reasearch had proven that fibromyalgia is a physical disorder.  I believe they have found markers in the blood that indicate fibromyalgia.  Search the internet if you want more info. Also don't accept anyone else telling you it's all in your head especially doctors. The greatest help to me has been being assessed and starting treatment with the fibromyalgia team at Torbay Hospital.  If you have not benefitted from seeing doctors, pain nurses, psychologists and physiotherapists who work in coordination, ask your GP to refer you to a hospital that has A fibromyalgia team.  It really is worth travelling to see them.  The psychologist is part of the team, not because it's all in your head but to help you work with other fibromyalgia sufferers to develop ways of helping yourself.  You have had a devastating time which has probably triggered the fibromyalgia, try not to lose hope but to search out support to help you manage your fibromyalgia. x

Hi, I started physio with one of my fibromyalgia team at Torbay hospital. We spent time talking about what happens when I operate until I am exhausted and what happens when I manage myself better.  Because I'm an artist, I could easily picture an image that represents my life when I operating at maximum because I've been living it.  I still haven't got an image for operating at optimal levels, it will come when I start to experince it.  To help me improve my stamina and strength, he introduced me to tai chi exercises which I found enjoyable and refreshing.  I will be starting classes at the hospital ad so as they can fit me in, but in the meantime, I'll work from Internet guides.  I'm feeling very positive and will keep you posted on how I get on.

Hi everyone, im new to this site and also suffer with Fibromyalgia. Ive had it about 7 yrs now, but took a few to diagnose. How nice to find like minded people who understand the effects of this horrible condition, as ive become isolated due to people who just dont understand what it does . I found when i was happier my condition lifted slightly, but as depression and isolation has crept in, so has my symptoms worsened. I know stress is a trigger for me, does this happen to anyone else ?

The tai chi classes are good.  They last 45 mins.  Although gentle and relaxing, they are harder than they look in terms of giving you a workout.  When I get home, I need to have my regular 2 hour nap to recover from the exertion But I'm hoping that this will build up my stamina.  If anyone is interested, search for reconnecttolife in Google. These classes  are aimed  at people like  us so the instructor doesn't push us too far, we are allowed to do it at our own pace and to take a break if we need to.  The Fibromyalgia team at my local hospital believe in Tai Chi to help those with fibromyalgia. Its too early for me to say but I'm enjoying it so that's enough for me.

Hi I'm Olivia, I'm new to the group and have been diagnosed with fibro for a couple of months now. I had an accident nearly 3years ago which led to 2 operations on my hips I feel this is what kicked it all off. I've been doing research on fibro but I feel a little isolated with no where to turn. I'm on numerous medications and have three young children all under the age of 6. I'm not able to really do much with my children which really gets me down, I'm even struggling to plate my little girls hair as I'm loosing grip in my fingers on some days. Has anyone else had this issue as I'm not sure it is my fibro or something else. Any information would be great fully received x

Hello I am new to the Group also,  I was diagnosed in 1995 but know I had suffered many years before this.    Olivia I feel for you as I know what it is like to bring up a family whilst having fibro and the isolation, I used to be at the school gates and ask the other Mum's do you feel like I do and tell them how I felt,  or go to a Mum's coffee morning and feel so out of the circle 'cause they did not feel the pain etc., I was going through.   My children are all grown up now and the fibro is still with me, I do feel I let them down in many ways and feel guilty about it, they missed out so much on activities I could not take them too.

the Tai Chi  sounds good peewit14 will look that up, but keeping my arms up away from my body for any length is a no, no.

It is good to belong to online Groups when one is isolated you do not feel so alone.