Newly diagnosed with fibromyalgia - Fibromyalgia Acti...

Fibromyalgia Action UK

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Newly diagnosed with fibromyalgia

BLOSSOMing profile image
BLOSSOMing
β€’11 Replies

Hello I'm blossom, and newly diagnosed with fibromyalgia in June this year though I'm sure I've been suffering from it since 2009. I was also diagnosed of L4/L5 degenerative last year. I'm at a the initial stage of fibro and I'm trying to understand this condition. I'm sure with you good people I will muddle through. It was a relieve when I find this forum....I'm not good with things like posting and talking about myself but I hope to contribute and learn in this forum...thanks xxx πŸ˜€πŸ˜€

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BLOSSOMing profile image
BLOSSOMing
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11 Replies
β€’

Hi

Nice to hear from you.

I am sure you'll enjoy being on here as we all try to support each other and post info we find and generally as were in the same boat we understand.

The mother page has useful info and the NHS have a web page too.

Please post and let us get to know you, I know it takes time to feel you can. A lot of us have trouble sleeping and are on during the night.

You can have a moan, ask questions one share a joke or an uplifting pic, we like to be friendly and keep each other's spirits up, as a lot of us suffer from depression. I can honestly say this site has lifted my spirits and I have made friends on here and don't feel so lonely and lost with this terrible illness.

If you want any help please ask and someone will try to help you, just with friendly advice or tell you of their experiences. As we are not qualified to do anything else.

Look forward to hearing more from you.

Take care and best wishes.

BLOSSOMing profile image
BLOSSOMingβ€’ in reply to

Thanks fibropop, it's good to know that I've got people going through same thing. To be able let out Especially at night :) I don't sleep most nights because of pain and restless legs even if I do sleep I struggled a lot to surface in the morning through the fog and weakness I find myself in every day.

The question I have is if this feelings will ever be over? I stop working since June thinking I might go back but evaluating myself so far,I don't think I will be ready for work anytime soon. I can't drive our manual car anymore, or even shower or go out without assistance.

I'm in the process of applying for PIP which I'm not sure I will be getting yet..im confused to be honest....too much stressful situations and take a lot from you...sorry for ranting!!!πŸ˜‘

β€’ in reply toBLOSSOMing

Hi again

You are not ranting. Don't worry.

Rightly or wrongly I feel when first digs were normally at a really bad point in fibro. Then we have to accept what we have and that it can be life changing. I struggled with this and was in denial for two years and angry, I tried to keep doing my normal things but made myself really ill and had to get the ambulance out etc. I'm not retrying to scare you just explain that you have to adjust, as stress etc can make it worse.

I went to a pain clinic and they explained you can't fight it as you would a cold and try to continue as normal. You have to be kind to your body listen to it and not over do things. They say pace yourself, do a little and rest and repeat. It's difficult at first, but does work. Some people do manage to work, maybe pastime or change jobs etc.

I don't know if your on meds? Been to a pain clinic? Pain clinics can offer alternative therapies.

I cannot take the meds, as found I had bad reactions to them and allergic to morphine and codine. I am on anti depressants though and migraine tabs.

I suffer in the mornings worse and it takes me ages to get up and dress et. I try to get up every day and do gentle stretches, have shower and use my hand held massager and put on Volterol gel. I take extra vits and especially vit d and magnesium, which fibro sufferers can be lacking in and my bloods showed I was. I potter and rest etc, try to eat healthy foods. By the afternoon and evening if I've not over done it I feel a bit better and try to do my chores then.

I still try to go out, but plan it and don't walk too far etc, or I pay for it the next day or so. We still need a life.

In the evening I take my hemp tabs, a they help me relax and herbal sleeping tabs, I get about 4 hrs if I'm lucky. Some people have found Epsom salts in the bath help, as magnesium is absorbed through skin quicker. Also a Suppliment called D-ribose in powder for, seems to help, it sort of helps the muscles with energy storage. You can get it from Amazon and they explain the benefits better than I can.

I am told by Drs ther is no cure yet, but all around the world they are doing loads of research into it! I found something I posted the other day about research a Spanish dr was doing into it with the optic nerve, so we live in hope soon they will get there.

I hope this helps.

Good luck and keep In Contact.

Best wishes and night πŸ‘πŸ˜΄

BLOSSOMing profile image
BLOSSOMingβ€’ in reply to

Wao!! Thanks, will make note of some of these. I'm sure they will come handy..hopefully I will get some sleep...πŸ˜‘

β€’ in reply toBLOSSOMing

Night 😴

purplegothic1967 profile image
purplegothic1967β€’ in reply to

Hope you don't mind me joining in. I have joined in with research at Kings college. They are looking in to seeing if Muscular skeletal including Fibromyalgia are in our genetics.

It would make sense.

I am in constant pain and take a cocktail of tablets including Amitriptyline for my restless legs at night. I also find the cold helps. I can't work in the heat especially my shoulders, they ache so much.

I don't work, but I have a little enterprise making dog treats. I can do this around the illness.

I wish you well and hope to talk again x

β€’ in reply topurplegothic1967

Not at all, the more the better.

It will be great if all the research, gets a result and finds a cure or something that will help us all!

Sounds like a good job idea.

Keep posting.

Nice to chat.

Take care and best wishes.

peck profile image
peck

BLOSSOMing , HI and welcome!!You don't have to be good at writing and posting we are here to support you no matter what.Have a good night.Peck🐀

TheAuthor profile image
TheAuthor

Hi BLOSSOMing

Welcoem to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:

fmauk.org/

I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

BonnieSue profile image
BonnieSue

Hi BLOSSOMing and welcome! Have you tried Mirapex/pramipexole for your restless legs? It's a prescription drug that really works. I find it a relief to have it work for my RLS as it can drive me mad to have my legs jerking every second or so for an hour or more. I can't do anything else while they are jerking like that. Do your legs do the same?

BLOSSOMing profile image
BLOSSOMing

Thanks Suez, I will look into this drugs. Yes my leg jerks it's like traveling pain in your muscles, sometimes it crawls and sometimes it run fast along my legs. So uncomfortable that its hard to sleep, Is that RLS??

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