All your fibromyalgia experiences, questions and answers.

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Postby fibro-lu » Thu Jun 06, 2013 9:36 pm

all the best :cow-wave: Lu
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Postby LibbyWick » Wed Jan 15, 2014 3:46 pm

I really should have made more use of the forums. This was really interesting. I've been diagnosed with FM but do often have a sore throat and my white blood count is elevated every time I have a blood test, as well as chronic pain and fatigue. So I guess I may well have ME/FM&CFS :yikes:
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Postby cacran » Tue Jan 21, 2014 11:34 pm

this is the first time i am posting and can't use capitals as i have carpal tunnel in my l hand so please excuse this.
i was diagnosed with cf/fm so many years ago, i cannot remember when. i have forgotten what being normal is like. until i got some steroids from out of hours gp for the carpal tunnel pain. all my muscle pain went. i only got enough for three days. my pain has come back. my gp says i can't have any more as they have side effects. i am devastated. a few days of relief reminded me what life was like before. a time with no pain, no tiredness and no brain fog. my sinuses were clear my breathing effective. i felt great and now i feel awful again.
i also have underactive thyroid, high cholestrol, high blood pressure, ibs, acid reflux, depression, lichen sclerosis and carpal tunnel syndrome. i take loads of meds. i have a few allergies too.

is there anything out there for us who suffer from this debilitating condition?
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Postby Lindilou » Sun Mar 30, 2014 11:35 pm

What causes Fibro in the first place, how and when and what makes it 'happen?


Postby FluppyPuffy » Sun Mar 30, 2014 11:52 pm

The actual cause of FM is still unknown Lindilou, it's one of the many areas that needs an awful lot of investigation and research into the physical/microbiological or what ever other technical named reasons that could be behind it.

A good number of us have times and experiences which we think may have been the trigger/cause of things for us. In a lot of cases, these things seem to have happened over periods of time, with various things gradually appearing and affecting us.

The kinds of things that seem to be the potential triggers incl physical trauma, such as injury or surgery, emotional trauma such as an abusive situation or the lose of someone who was very significant in life, illness, and a whole host of other things that have just fled from my mind :oops: :oops: :oops:
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ME and Fibromyalgia

Postby babsie » Wed Apr 02, 2014 1:22 pm

I have just been diagnosed with FMS. For the last 12 years I have had ME. To be honest I didn't know you could get both.
I had to give up work after long term sickness 7 yr ago. My biggest regret.
I find now the exhaustion is worse completely debilitating. Now I have joint pains resulting in difficulty in walking and going up stairs.
Horrendous headaches, lack of concentration, forgetfulness. I have been prescribes Tramodyl and Paracetamol for pain relief as co codamol 30/500 mgs wasn't touching the pain.
It's hard for people to understand both of these conditions as outwardly I don't look any different. If I went to the door in PJs or had a plaster cast then people would say there was something wrong with me.
The ME was as a result of shingles and my GP has said that the FMS is result of stress. My Mum passed away last year after the most traumatic time both to her and us.
I keep waitng for the day I can say "yes I am fine" instead of "I might look fine but I feel absolutely awful."
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Postby oldsheep » Tue Jun 03, 2014 12:04 pm

The main difference for me (I started with CFS/ME) was the low grade fevers, 10 days on then 10 days off, the incredibly sore throat, infected sinuses, and painful neck, underarm and groin glands.
My fibro developed after a very stressful event and was more insomnia, and pain in muscles, nerves - often the same culprits.
I see them as linked and part of the same debilitating illness. They certainly have IBS in common.
I had a brilliant physio for a bit who helped enormously with TMJ, which is always a problem for me.

I spent years chasing a "cure" and taking abuse from consultants who accused me of skiving/being depressed/neurotic. I am anxious, but it doesn't cause either CFS or fibro. That was back in the late 1980s. Someone I know got CFS as a result of glandular fever about 2 years ago and she has had nothing but excellent support from the NHS. I'm glad that's changed, even if we're no nearer to being well.
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Postby harpoman » Fri Jun 27, 2014 11:51 am

I would have imagine people would act un-sympathetically toward Fibro sufferers. But families should be a little more supportive and say things like "my friends have it and they still do things and carry on" . :evil: But it is so hard to when you try and do things and then spend days on the bed trying to get over it. I did an hour cutting the front hedge two days ago and still I have pain in my legs and arms. But we mustn't give up. tuh! :crazy:
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Postby rubes » Fri Aug 01, 2014 11:19 am

My Husbands family seem to have discussed me at length, 'Pull yourself together' 'Get a grip'
Hmmm I believe in Karma!
Cannot say anything more right now I am so distressed. :(
I have FM had it for 7 years.
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Postby Joannee1969 » Fri Aug 01, 2014 10:16 pm

I was told i had oesteo arthritis in all my primary joints three years ago.I had been getting pains in my body all over,i had been tested for carpal tunnel because the pains and tingling in my wrists was terrible,I also drop things a lot.I had terrible pains in my lower back and i am hardly able to walk,i do not go anywhere with out pain.february last year i was also diagnosed with fybro, my sister mother and aunt also have it.
The tired ness and exhaustion is one of the hardest things to cope with especially with the pain on top that drains me.I used to work in the care industry but in the end was told i needed to retire on ill health as i could not do my job properly,
I got married three years ago and was able to walk down the isle with little pain but now instead of my husband being just my husband he is my main carer.
This has made me feel terrible as i am the one who should be looking after him,he had to change his hours at work so he can care for me during the day.He comes in from work helps me get ready then he go's to bed for a few hours gets up then starts again,i feel so helpless sometimes he has to do so much for me and i don't think he was that prepared for that when i married him.
I have tried all different types of pain relief but i cannot tolerate them.I am now on a patch that do's help a little but i really just wish sometimes i did not have this horrid illness.I am trying to stay positive but I'm finding it really hard.If i worry or am stressed i feel worse.Is all this normal or am i just being silly feeling this way,I would love to go back to work but at the moment it is impossible as I'm just so exhausted and i know i would not be able to cope.Sorry for the moan just needed to get this off my chest,and would like to know is it normal to feel like this and not be able to control it.Is there anything that could help reduce the pain and tired ness that would help me a lot .
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