Life with fibromyalgia

Hi everyone, I'm new to the site. I've recently been diagnosed with fibro after 6 years + of trying to get answers, I also have kyphoscoliosis, facet joint disease and other issues which don't effect me as much. I must admit I was relived when I saw this new doctor at the pain clinic, she listened and agreed with me and couldn't understand why it wasn't picked up years ago, also informing me I'm one of the worst she has seen when doing the pressure test.

I am in agony today, I can't sit still, it hurts, I can't stand it hurts so am totally fed up and feel so alone and isolated. They also can't give me pain meds due to my hypersensitivity to many of the ones they could use, so I'm muddling through each day with no pain relief either. She did mention about the pain INPUT program which is like counselling to help you deal with your pain...... Has anyone heard of that or tried it? 

Anyway I'm rambling on now, please get in touch 

I went to a back to work support group, which taught pacing yourself tactics and to be honest I don't there is any for FM you just have to do what you can when you can and sleep when you have to, as there is no set times to when your FM fatigue or pain will hit.  Yes you can over do things when you are feeling good, but how often is that?  When you have a  flare up I feel you have to play around with pain medications to get the best pain relief possible for you; Paracetamol, co codamol, Ibuprofen, Tramadol, Palexia etc, taken at the recommended dosage, whatever works best for you at the time, as each flare up can be different and no one persons FM is the same as anyone else's.  I find that two soluble 500 mg co codamol give me an instant lift for a short time, but if you have something you want to do, should it only be shower, they are worth buying, as my doctor will not prescribe them due to their salt content.  If anyone has any other advise or coping mechanisms please share!  

Really suffering badly today taken all painkillers and still in agony. I think it must be this awful weather in South UK, strong winds and heavy rain but very mild, the dampness seems to have overtaken my whole body, can't even manage to have shower it's getting me down and depression/anxiety with fibro is evil. Anyone else find the weather debilitates soooo much. Gentle hugs to all xx

Hi there I'm Karen I have fibromyaglia too. I'm in a lot of pain every day. I try to go out and do normal stuff but I'm in agony after and sometimes I'm in bed for 2 days resting. I'm only on gabapentin but sometimes it seems it doesn't work I still can't sleep much at night because of the pain and rest less legs but going back to see docs about it I used to have cold and hot sweats but there gone I also still have brain fog but it's not that bad since I first had it in July I'm still off work because I'm in pain all the time and I can't stand for long periods of time I don't know if I will be going back I just take it day to day some days are good some days are bad I'm trying to stay positive I just want this to go away 

Spoke with dr 'again' today as been in so much pain these last couple of weeks plus it's getting worse and painkillers not touching it! I'm in bed with heated cushion at my back! Dr not really much help or understanding and is now referring me to another hospitals pain consultant. I usually go to local hospital 10 mins away, the one referred can take up to an hour travelling :( but I've got to be optimistic and hope they appreciate and understand how debilitating and lonely living daily with chronic pain causing anxiety and depression can be. 

Dr is marking referral urgent so hopefully will hear soon and keep you updated. Wishing you all a low pain day, Pat xx

Hi Mandan I've been in house for 5 days been in a lot of pain the painkillers aren't working and I'm not sleeping good think it's to do with the weather it's affecting our fibro it's getting Me down and I'm moody and snappy I wish I wasent been to my occi health at work and I'm still not fit to go back to work for a couple of months I don't know if I will be going back  I'm taking it day to day and seeing how I go write back if u want 

Hi Kazchick, sorry your having bad time too. I still haven't heard from hosp - surprise surprise. I'm also waiting for more blood test results for thyroid! I agree weather plays a huge part with pain and fatigue. It's awful your off work so long as you say seeing how you go day by day,  unfortunately I had to close down my own business because of this evil illness.

how long have you had fibro?

hope your having better day today, Pat

Hi,

I have had fibro for nearly 20 years now, and until recently I was coping reasonably well, my doctor had my medication about right (although I do believe the longer you have fibro the higher your pain tolerance becomes because we have to tend to just 'live' with it), however I was then diagnosed with T2 diabetes in June which has meant I have had to change some of my pills. Now I am in a lot more pain again and I am having to try and deal with the diabetes. I feel there is very little support from the NHS and do struggle with feelings of being alone and having to do it all myself. I guess it is now a balancing game for me, but it does get you down.

I am sorry some of you are struggling with your pain, I remember the times when it has been really bad and other people cannot comprehend how difficult life can be with it. Do not let it go, keep chasing your doctors for referrals, or for a change of medicinal combinations, there will be something out there that will help you, just don't expect a miracle, I do not remember the last time I was pain free, but you will get to a point where you can have something of a life.

Deb

Hi I've just been diagnosed with fibromyalgia and some problems with my hips there is also the possibility I have arthritis I'm in so much pain today with my hip I can barely walk and I have rung work to tell them I won't be in today and I can tell they are annoyed they don't understand at all because I'm only 22 they think I should be fit and healthy... I'm really scared I might lose my job I don't know what I will do then it's all just a vicious circle and it's starting to get me down which is making symptoms worse xxx

Hi, i have been recently diagnosed with fibromyalgia. Consultant told me that i cannot have medication for it at the moment as they may mess up my sleep study investigation which takes place in november. My main question is how do other people with fibro tolerate meds as i seem to be sensitive to absolutely everything! I especially hate cardiac side effects as they terrify me. I may be put on a stimulant to keep me awake but they are a bit hard on the heart, or so i have heard. Any thoughts on medication sensitivity? 

Virtual hugs to all