FIBROMYALGIA

Good morning all,

I have an adjustable memory foam bed Xsan. I sleep in a permanent reclined position, but still cough, but think it's down to pollen atm. I don't get much peace from Feb to end of May, but it;s not so bad now I don't work--at least I can sleep in the afternoon if I'm shattered.

I keep trying to get people on the FMAUK site to try Citalopram. I was talked into it by my Daughter, who has MS & she finds it helps her. MS & FM are so similar. Well, I had a chat to my Doc & he tried me on it. I can't believe how quick it worked. All the time I struggled on Amis, the dry eyes, mouth, feeling sluggish & it did little to help the pain/sleep.

I feel more like myself these days. I'm less up & down emotionally--which is great as I was always a laid back person, until this took hold of me.

Have a nice day everybody. :-)

Hi all

I hope you got on ok Xsanx at the doctors. What did your doctor say about the link with thyroid and FM . I take 150mg of thyroxine daily as 16 years ago I was diagnosed with thyroid cancer. I had radio iodene treatment twice and luckily have been ok since then. Although have to go for a check up once a year for the rest of my life. I have no choice being on a high dose as it stops any cancer cells returning. What do you take Citalopram for? I went to the doctors today to talk about rheumatoid and osteoarthritis. My doctor is going to send me for a blood test next week to check that it is OA and not RA. My arthritis has been really bad. Do you have OA and if you do did you have it in both ankles or in different parts of the body. With rheumatoid they say if you have it in one ankle then you get it in the other ankle, toes, knees etc. I went as I had some lumps of my fingers which are due to OA and cause deformities. My hands have got worse very quickly over the last few months. I do have it in both big toes, ankles, knees, wrists and fingers.

There is always something else that comes along to keep us on our toes. If it is not RA then I do need to find out what is happening with the OA as I am only 56. I am so fed up with the rain as makes everything hurt at the moment. I hope you are doing ok today and everyone else. Take care all. x x

Hi, I'm Garry I have had Fm for about 13 years and been diagnosed through a hugely supported Dr for 10 years, Since my Dr left the practice i go to all I've had from the other Dr's is more and more medication, I'm now on Amitriptyline 50mg, Diazepam 8mg, Ibuprofen 400mg, Baclofen 10mg, Zopiclone 15mg, Gabapentin 400mg, Buspirone 5mg, Atenolol 50mg, Tramadol (Quick release) 50mg I take them like sweets, Tramadol(slow release) 200mg, Sertaline 150mg, Morphine patches. I take anywhere from 1 to 8 of each tablets daily but still I get all the pain you have all described, Making yourself move around even if its a few steps is important.

I got dragged into the DWP last week as everybody is having to do so now, She was quite sympathetic and actually described FM in a way I've not heard before she said its like having arthritis without having it!!!!????? They are majorly overhauling the benefits system now and I'm sure us Fm sufferers will be dragged over the coals especially when they change the entitlement to DLA from 2013 we will be the first to loose out from what i have read!!!!

I could write all day about this symptom and that symptom but I've always told myself i wouldn't ever start doing that. This is the first time I've ever done anything like this so it would be great to hear from some of you. Take care all xxx

hi all, i think iv had fms for about 15 yrs, but only found out a few months ago, i work in a dementia home, its hard and fast, i hav 2 cover around 44 hrs a week so i can manage the bills, im finding the job harder by the day, and wonder what's. com 2 come, how i will live, i try not to say much to work mates as im sure they don't believe me as they cant see anything . com is how i feel.ps thats the 1st time iv said that 2 any1, it feels weird but nice x

Hi Everyone.

job, incap and dla are all yuk words.

I wish I was able to work because a really enjoyed my job. I would love to be employed again, I loved my job and the challenges that came with it. incap - it helps financially and we would really be stuck without it, but I am made to feel guilty for getting it even though I have worked for many years and have contributed nic, and my hubby still works full time, dla - its a big joke because there are people out there getting this benefit for little or no reason, yet folk like us cant get it no matter how bad we are and how often we apply, just because we have a good day, once in a blue moon, then we are deemed as coping, just because I have a loving network of people who help us makes me non ledgable for dla because I am getting support. moan over.

I have had 6 good days but things have gone down hill again, I didnot over do things yet I have had to start taking voltrol again :o( I am waking up during the night to take pain killer for my left side ---> left shoulder, arm, wrist and hand/fingers, its always the left side that the fm affects. so now my dear physio has suggested steriod injection - the thought of this is terrifying me. Has anyone had this injection??? any info that may sway my decision???

Anyway, hope you all have a restful night. God bless

hi all

you know what, it is actually a releif to read that you guys feel the same way i do, sometimes you feel so alone and knowone understands because they cant see it. i was diagnosed with fibro and joint hypermoblity and all the other fun stuff over 8 years ago i am 33 and have and autistic son of 13, which is really hard because he doent understand whats wrong with me. re amitrypline, i came off it a couple of years ago because i was seein things that were not there alot. dr as hospital has now put me on nortriptyline which is very like it but less side affects. and you can buld up to 50mg at night, been takin it for around a month so will see how it goes. and i agree about finding a dr who understands i have one at my gps who keeps tellin me i need come down from my pain killers which barely get me through the day most days because she doesnot understand its maddening.

trisia

Hi Trisia

Dr's!!! Im chuckling, when you find a good one stick with him/her, build up a raporr so that they get to know and understand your condition. Ive changed mine, and my current dr is brill, every yr she does a mega medical to rule out any other possible conditions, because my medications can hide any possible new ailments. she went on maternity a yr ago and i really did miss her, but once she was back it was full medical and review to update - there are a few fab doctors out there but hard to find. I just had a thought, Im going to send my gp a card in appreciation. You are not on your own, so hang in there. have a bright day.

XsanX

Hello all,

I had a Doc who was a friend also. He diagnosed me as having fm, but unfortunately, he was stuck in the 'there is only Amitryptiline that does any good brigade' and it didn't do anything for me.

I decided, when he went part time, that I'd see his colleague. What a difference! Now I can voice my opinion on my own health, have changed from Amis to Citalopram, which has worked for me. I take 40mgs each morning & it's changed my life.

About 2 weeks ago I started a low oxalate diet after reading about a British GP who has fm. She's made a brill recovery & has now gone back t work. I'm feeling much better after 2 weeks (noticed the difference in a couple of days). I have more energy, more get up & go. The stiffness hasn't got too much better, but apparently you have to be on it around 6 weeks to have full benefits. If this continues I will be looking for a job in the new year. I haven't worked for 5 years. :-)

Hi Everyone.

Yes, someone at Hubby's work place gave him a copy of the article by the British gp, and it sounds too good to be true. I have researched it and was comtemplating, but because it sounded too good to believe, I put the idea aside. Im so glad that you have shared it with us, because I will be trying it. Any more tips will be very much appreciated. . . . . Thank you and well done you for braving it on our behalf. keep it up. I havent worked for 11 years, and finance is soo tight. Im missing my daughter who has left home to persue her fine art degree, im missing her and the rest of us are missing her cooking lol

Hi,

I have already applied for a job. It might be a bit early, but it'll get me into doing the applications again. The job is an assistant at a radiology unit at 2 local hospitals. I doubt I'll get it, but the experience will be good. It's way below what I'm qualified for, but I don't want a stressful job again.

If you google low oxalate diet--there is a diet sheet telling you the foods that are high, med & low in oxalates. The main things to avoid are potatoes & any veg that grows underground. That means turnip, sweet potato, carrots, beetroot (which I love). Tea is another high, so I am down to 2 cups a day. Coffee is fine, so is any sort of wine, beer, spirits. :-)

If you decide to try it--good luck with it. :-)

Gillian

Well done you. =o) the applications and interviews will be good practise and confidence building for when the right job comes along.

You are an Inspiration for the rest of us,keep us up to date on how you are doing. I have got the food list and will be going through it again tomorrow, and start in ernest. well done again

Greetings from hot Texas! Unbelievable that I got to this site while searching info on Isle of Iona!! It must be meant to be!! I too have endured fibro for a long time. My dr believes there is foundation for fib if one has had chickenpox, herpes simplex, mononucleosis and low thyroid. Check yes for all of these!

I have been on gabapentin 200-400mg 3 times a day, I adjust it for pain levels and I feel that has been the most beneficial of all the different drugs I've tried. I use a variety of over-the-counter and prescribed gels and ointments; one of the best pain relievers I've found is Salon Pas patches; sometimes I look like I've got cuts all over for all the patches stuck on! Hypothyroid is addressed with 37.5 mcg of T3. Most docs don't know about that, but insist that your levels be checked; just don't take T4 with it, and I think thorazine is the equivalent. My T3 is compounded.

I also take zolpidem (Ambien) for sleep, and get 7-8 hrs of restful sleep, unless the dog needs to go out in the middle of the night. Another best thing is omega3 with vit D3, it's really almost cured my arthritic pain.

I am retired teacher, young-looking 70 years old, live alone, and have a hard time with friends who don't understand why I can't do all the things I used to do. Unfortunately fibro is an invisible disease, which is why lots of docs say "it's all in your head." Just wish they'd ever felt like they had incurable influenza aches and pains, not to mention the brain fogs (I forgot my password twice while registering for this website.)

The best advice I can give, today at least, is NOT to overdo on a day when you're feeling fine! Do half what you think you can, and then take a nap!! Well, it's working for me. And know that each of you are acknowledged for your determination to keep looking for ways to feel better and being an inspiration to your fellow sufferers. You all are the greatest!!

Oh, oops, I didn't mean thorazine, should have written thyroxine or equivalent.

Hi I have had fibro for over 30 years but was only correctly diagnosed 5 years ago. Previous medication caused added problems then my dr was seriously uncooperative, so i changed surgery and found a good dr. trouble is they are five miles away and so getting to appointments is tough, but they never moan when I call up to say I can't make it as I am too poorly! I didn't get on with amatryptaline but am ok with duloxatine. I am allergic to quite a few drugs so am limited with pain killers. My left hand swelled up and hasn't worked and is very painful since mid June.I go back to the hospital on monday and dread that they will say there is nothing they can do so just put up with it, that is the same old story! I also have the usual ibs and sleep apnia problem

My sons are great as are their wives and partnersand I have beautiful grandchildren. I just wish I could enjoy my family more and depend on them less.Today is my birthday and I really don't want to finish it off moaning but as you all know life is wonderful, it is just fm that makes it suck!

Hi everyone 

i have had fm for nearly 2years and the dr is still playing about with pills, I have had enough as I have a job and 2 kids to bring up, I am the same with family not getting it at all. I have now stopped all medication and started on herbal remedies is I will let you all know where that takes me