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Fibromyalgia Action UK

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Scraggles profile image
Scraggles
β€’28 Replies

Hello, I am new to all this forum thing but would be nice to get advice from fellow fibro sufferers. Recently been diagnosed after YEARS of being ignored by my doctor (now ex doctor) tolkd me the pains & cramps in my legs was wear and tear. ..I am 32! and was 30 back then. It got worse so I changed doctors.... Lovely man who has put up with me for a while now lol. First diagnosed worth hypothyroidism (which took forever), which explained the tiredness/exhaustion and always getting I'll. I looked into fibromyalgia as I suffer really bad with sensitive skin but my doctor and refferal specialist ignored my thought on this. Had an MRI to find out I have a mild back herniation (slipped disc) ,so thought this was the reason for all my pain....nope! Low and behold it was fibromyalgia....as I had mentioned to them to begin with....gotta laugh it off really.

Anyway rant over....sorry.

The pain seems to have rapidly got worse within the last month.... I take zapain for pain relief but only when in agony as it constipates you and makes me feel drowsy and queasy. I have gabapentin too but problem is I have no patience to see it work as I just want instant pain relief plus I have real issues with taking pills would rather have injections. I can't swallow pills until I get the feeling to swallow otherwise I gag. Sometimes its taken me 10,mins to swallow 1 pill....you can imagine how achey my jaw gets. Doing this everyday 3 times a day.....no thank you.

Am suppose to be seeing someone about a pain management course (4-6weeks it is going to take for them to arrange an appointment apparently). Is this course any good?

Fibro is really effecting my social life and really struggle at work as on feet all day and do lots of heavy lifting and walking up and down 3 flights of stairs everyday.....its a killer! Feel like an old decrepit lady. Would be bliss to go part time I want to break down and cry and hit things most days the pain is that bad or aggravating.

Argh !!!!

Thank you for taking the time to read this and listen to me rant & moan. .βœ‹πŸ‘

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Scraggles
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28 Replies
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jaypikey profile image
jaypikey

Name the symptom,I get it and my skin is so sore at mo,eyelids, nose,neck,and just cannot find comfortable position to sit or lay in. Sensitive skin is awful, I can feel a feather like it's a piece if glass. Sending you blessings and health and well-being. God bless, JayX

Scraggles profile image
Scragglesβ€’ in reply tojaypikey

It might take a while to gewt to sleep sometimes but generally once I'm gone I'm gone....think the tiredness from the thyroid issue helps with that lol. Thanks for your reply. πŸ™‹

Leemaree44 profile image
Leemaree44β€’ in reply tojaypikey

The feather like it's a piece of glass thing..... so is that a common FM symptom jay? Lately I haven't been able to bear my partner to touch me - even a stroke on my arm feels like sandpaper dragging down my skin 😟 I'm so lucky he understands but it makes me feel so selfish - he just wants to be affectionate πŸ˜”

jaypikey profile image
jaypikeyβ€’ in reply toLeemaree44

Don't know,personally, I think Mr Dr is wrong,something happening to me,but not fibro,no I'm a victor not victim. Wen I c Dr gonna tell him DAT I'm coping,managed this life thus far,no,I'm okay in fact,gonna get back to work,had enough of sitting all day,got work to do. Gonna get signed off sick n get to work! Thanks Lord,u truly are The ONE who sees ahead. Won't b back,I'm a survivor,hope u all do get the help but a miracle has opened my eyes. Cheers all n don't worry,off to c Dr, u know which one, and gonna dust me self off, get job done, yes my friend, u know itsca symptom,

Welcome on board and to thefibroclub I'm sure you will get plenty of advice here As for my two bobs worth Itake Lyrica and codrydamol for the pain and Loranzapam for sleep For self help I ose self massage with double base cream from he doctors I found any exisise makes it worse I you need plenty of rest Try to be happy and good LU ck 😁

Scraggles profile image
Scragglesβ€’ in reply to

I find exercise painful and as for the next day I feel like I should be stood in madame tussards with all the other statues i'm so stiff. My partner will give me massages which helps for an hr or so. I find heat can help ease the stiffness though but I need to invest in more hot water bottles, 1 just isn't enough lol. Thanks for your reply. πŸ™‹

β€’ in reply toScraggles

Yea Iv got hot water bottles the best way to ease Fibro is with water bottles , good diet , cut out the booze and get plenty of rest

Scraggles profile image
Scragglesβ€’ in reply to

On weight watchers diet and barely drink anymore....more because I can't afford it lol. Good ol hot water bottles thoughπŸ™ŒπŸ™‹

Leemaree44 profile image
Leemaree44β€’ in reply to

I can so agree with the cutting out booze - last Wednesday I had 3 wee cans of Smirnoff RTD - and I very very rarely drink but we were celebrating. My whole body head to toe punished me for 3 days!!! 😟

Scraggles profile image
Scragglesβ€’ in reply toLeemaree44

Its terrible how painful even 3 drinks can make us feel the next day or so. 😫

Hi. I've been to pain management course. It is very good. You are taught how to get on with your life despite the effects of fibromyalgia. I've had fibromyalgia for some time now. I used to take all the prescription drugs offered by my doctor. They only made it worse. I stopped taking all of them. And I cope much better. I'm able to work full-time. I use natural/herbal remedies for vitamins and sleep. Since these have no side effects. I would suggest that you look into this and avoid all prescription drugs. THERE IS NO PRESCRIPTION DRUGS MADE FOR FIBROMYALGIA. My doctor told me that he didn't really want to prescribe them for me. I hope you are able to cope as well as I do.

Leemaree44 profile image
Leemaree44β€’ in reply to

Hi Grayback I was very interested in your reply. I've lately come across Dr Murphree on YouTube and he's an FM specialist in America who says pretty much what you just said. I got his book on kindle and I'm working my way through it. Would you share exactly what you take by way of supplements please? I would be grateful to learn what you have found beneficial 😊

β€’ in reply toLeemaree44

Devil's claw eases the pain. Since vitamins are factor, in addition to vegetables and fruits, I take supplements. To keep my energy levels up during the day I rely on the methods taught to the by the pain management team. I also use Epsom salts. At the end of the day, just before bedding down, I put a cup full of it in the bath, fill the bath with as hot as i can bare water, and soak in it for about 10 minutes. Then I massage with a muscle relaxant oil or gel. I am currently taking kalms for sleep. I take 3 instead of 1. In the day, while at work, I use elasticated support bandage on my legs and arms. Works wonders.

Leemaree44 profile image
Leemaree44β€’ in reply to

What is kalms?

β€’ in reply toLeemaree44

They are tablets made from valerian root extract. A plant that helps one to relax. You can get them in Asda or Tesco. The recommended dosage is one per night but for fibromyalgia sufferers two is more effective.

minesawhiskey profile image
minesawhiskeyβ€’ in reply to

I had nice effect when I first changed from paracetamol to co-cocodomol and at same time started Devils claw and Siberian Ginsing. I couldn't afford both so just kept up the Siberian Ginsing. Think I'll change from the Ginsing to Devils claw next month.

Leemaree44 profile image
Leemaree44

Hey scraggles.... shame you had to struggle so long with your Dr. In my experience there's nothing more demoralising than being told it's all in your head. I reckon anyone with fibro would give their eye teeth (amongst other things) to NOT have it, and to just be able to get on with their daily lives pain free and full of joy and energy!! I'm in pain 24/7 with lower spine/leg cramps etc and my GP has finally referred me to the pain management specialist but with no guarantee I'll be accepted! Yes it does make you want to just scream and cry and hit something some days cos it all just gets too much. I'm only 43 and was diagnosed at 32 but my flares are becoming more frequent and having to take pretty heavy pain relief daily while holding down a full time legal secretary job and single mum of 4. I truly hope you have some success with getting to see a specialist. Xxx you're not on your own with how you're feeling sweets.

Scraggles profile image
Scragglesβ€’ in reply toLeemaree44

Hi there, thanks for us kind words....u sound like a trooper. Respect to you. πŸ™ŒπŸ‘Š

spiritof25 profile image
spiritof25

Morning scraggles, it's nice to have you on board with us. So sorry your struggling so much but we all understand just how hard it can be on a daily basis. I was diagnosed 2 years ago with fibro and like you I struggled with pain for a few years before that. I did reduce my hrs at work and went part time but eventually had to retire on ill health. I was given given medication after medication un till I found what was right for me and I too tried all the herbal remedies but they didn't work for me but I carry on taking magnesium and vitamin d. As grayback says there are no prescription drugs for fibro but gabapentin is the most common one that Drs prescribe for it. I was given it but it did nothin for me. It's all trial and error to find what's right for you but it does take time. I hope you find what helps you the most but you'll find lots of help and understanding on here and we all have a rant and a moan. Take care. Love and hugs spirit xx❀️xx

Flyby7 profile image
Flyby7

I went to pain clinic lady very nice and understanding my doctors has given me ARM IN cream very helpful and forbid gel dose a threat job to rub on joints and buy the way hello and welcome to the FourM you will get some good advice

bluebell99 profile image
bluebell99

Hello and welcome to our friendly fibro forum where you can get support, advice and help with a chuckle or two to lighten the mood.

Have you seen our Mother Site fmauk.org ? Here is a wealth of information about all things fibro.

I see you have met some of our fibro friends already today. Sadly, waiting years for a diagnosis is a regular occurrence and generally only happens when everything else has been eliminated.

It is difficult to explain fibro to people as there are so many different symptoms and not everyone has them. It is the same with medication, what suits one person may not suit another, it is a bit of trial and error.

I am wondering if you have tried a pill crusher for your tablets? I know it is not suitable with sugar coated tabs or capsules but should be fine with paracetamol, codeine etc.

I am glad you have found us here and hope to see you about the forum in the future.

Kay

Welcome Newbie great site to be on loads of Fibro friends who understand what you are experiencing - admin team is very helpful.

One thing if you don't mind me saying and others who've written to you - is to check if you can take natural/herbal meds if you have other issues with health - I was once taking ginkgo Bilbao (think spelling may be wrong) only to discover I shouldn't have been taking it as I have High Blood Pressure and therefore had to stop taking it. Take care πŸ€—πŸ€—πŸ€—πŸ˜˜πŸ˜˜πŸ˜˜

Scraggles profile image
Scraggles

Thank you all for ur kind words and advice. Its all very helpful and gives me saomethingf to think about. πŸ™ŒπŸ™‹ ur all troopers and stars. Thank u my fibro boss friends. πŸ‘ŠπŸ‘Š

Janet28 profile image
Janet28

Hi Scraggles and welcome to our wonderful forum ☺I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you & talking to others at different stages of their lives with Fibro & learning from their experiences.

It does help with the whole process & i wish I had found the site years ago. I have had Fibro for nearly 30 yrs & I'm still learning about it, like we all are.

I'm sorry you are in so much pain and i see you already have some good advice which I can't really add to, just wanted to say Hi.

Please follow this link for easy instructions how to lock your post & stay safe on the internet.

healthunlocked.com/fibromya...

Peace, luv n light

Jan x

TheAuthor profile image
TheAuthor

Hi Scraggles

Welcome to the forum and it is wonderful to make your acquaintance. I want to genuinely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

Scraggles profile image
Scraggles

Thank you πŸ™‹

Where can I get those from?

Thanks for that. I'm going shopping.

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