What a condition: Hi I wonder if anyone... - Fibromyalgia Acti...

Fibromyalgia Action UK

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What a condition

nanbob profile image
11 Replies

Hi I wonder if anyone has any idea about copping with Fibromyalgia pain, there's not a minute in the day I'm free from pain with Fibromyalgia ie: headaches muscle pain feeling tired all the time awake during the night and very vivid dreams I'm at the end of my tether can someone advise me of how they cope, thank you.

nanbob

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nanbob profile image
nanbob
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11 Replies
YASMINTINA profile image
YASMINTINAFMA UK Volunteer

healthunlocked.com/fibromya..., morning, yes it is horrid feeling this way, there are times when your body is in what we call a flare, the fibro seems to have gone up a gear, you do need a GP that is listening to what you are saying, don’t be fobbed off . See a different one if your current one is of no help. There are ways of getting the right medication for you even though sometimes it is trial and error for a lot of fibro sufferers I read here myself included, Resting /pacing as much as you can during the day which I’m sure your already doing, have you tried Epsom salts in your bath and have a soak, I find that good. Lots of members try heat pads. Tens machine, rub in gels, anything that can dampen down the pain. Tell your doctor about the lack of sleep if they can help with that it would be a good start , broken nights continuously is very wearing. Xx

nanbob profile image
nanbob in reply to YASMINTINA

Hi Yasmintina thank you for all the information you have given me, I phoned the Doctors surgery this morning I'm sure she won't come out will likely phone me back with some useless things to do, like put it out of my mind, thanks again my friend, hope you get a bit of pain free time, thanks again Yasmintina.

nanbob

My name is Bob.

YASMINTINA profile image
YASMINTINAFMA UK Volunteer in reply to nanbob

Your welcome, if they will not come out would a friend /relative be able to get you there In the car, not like years ago when GPS had time to make house calls, 0ur surgery you have to explain now why you need an appointment and they will get nurse to call back to go through if they feel you need one making it even harder, it really does not make life easy for people. I hope Bob you find the forum helpful I certaintly do .

nanbob profile image
nanbob in reply to YASMINTINA

Hi Yasmintina, I live by my self now my lovely wife passed away 13 years ago, I'm still waiting on phone call from Doctor, when I get a call it will be the same old thing it's Fibromyalgia just try and get on with it, I'm sure that's what she will say, thank you Yasmintina for you're advice, will let you know how I get on take care my friend.

nanbob

ps: my name is Bob

in reply to nanbob

Hi

I really hope you get some improvement soon. Could you take someone with you to be an advocate and also could you show your GP this forum to see what he)she says when you say that is how I feel all the time, no sleep etc.

Lack of sleep is rubbish, I've had an hour or less in the last five years. They can't give me anything else cos I'm on loads of meds as it is. Please take care of yourself. Lynne

ducati76 profile image
ducati76 in reply to nanbob

I'm in the same boat love, stuck at home, no transport, Drs try but I'm best trying to get through on my own.

When I was suicidal it took them 2 weeks to come out.

nanbob profile image
nanbob

Hello Mydexter thank you for your concern about my health with this Fibromyalgia, the doctor wouldn't come out so she made an appointment for me to see a Doctor Monday next, I will see if I can get through to her and hope I get a bit of help, thanks again my friend, will let you know how I get on Monday.

FionaF profile image
FionaF

Hi Bob, I’m so sorry you’re struggling so much right now. I’m sure your poor sleep is contributing to your pain as that is one of the horrible things about fibro. We feel exhausted but can never seem to get a restful sleep.

My doctor prescribed Circadin to help me to sleep. It contains melatonin which is the hormone your body naturally produces as it gets dark outside. You take it about an hour before bedtime and it tells your brain that it’s time to sleep. It also helps you to achieve a deeper level of sleep. Can you ask your GP about it? I know a lot of doctors are still quite ignorant about fibro and have no idea how to treat the symptoms so you might have to be quite firm about wanting to try it. I was previously given Amitriptyline to use at night but I don’t like it as it leaves me groggy for most of the following day. Yuk ☹️

As far as managing pain goes, it’s really about finding a regime of medication and lifestyle changes that best help your particularly symptoms. I take Citalopram and Pregablin and manage my pain with co-codamol and sometimes Tramadol when it’s really bad. If you are able to, going for a gentle walk can really lift your spirits, especially if it’s a nice day. Just being outside always makes me feel better even if it’s just for half an hour or so. I take one of our dogs with me and often meet other dog walkers who often like to stop for a chat 🙂

Don’t give up. Living with constant pain is awful and can really make you feel like there’s no point in going on. Just be kind to yourself and try to accept things as they are for now. It takes time to find a regime of treatment that works for you but you’ll get there. Take care x

nanbob profile image
nanbob

Hi Fiona,

Thank you for the information on Fibromyalgia, as I say the Doctors don't listen to what I have to say, I go to Doc this Monday and I will mention Circadian, will let you know how I get on.

My wife passed away 13 years ago and that was a miss, I'll be 80 years old October next, this disease has taken over my life, I have hobbies Astronomy, Licensed Radio Amateur, and Photography, but find it hard to do any of them, anyway Fiona hope you don't suffer to much with this disease take care.

Bob x

Kazabev profile image
Kazabev

I have had fibromyalgia for about 5 years I was taking paracetamol 8 a day I try and rest a lot and I now take Tramadol only 2 a day 1 Inthe morn and one Inthe evening I have Oestoporosis and osteoarthritis aswell It has taken time and I try and walk a little everyday pain is still there but I am progressing to alleviate becareful Tramadol can be addictive Crafty Karen

Queenielot profile image
Queenielot

Hi yes its awfull and we all suffer the same only one's more than others but we listen and we probably can't give you the right answer but were here

Try getting plenty of rest and keep warm hugs to you x

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