Hello is there any support out there? - Fibromyalgia Acti...

Fibromyalgia Action UK

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Hello is there any support out there?

minou104 profile image
15 Replies

Hi, I have been diagnose with fibromyalgia a year ago but have suffered symptoms for about 2 years, I am 41 years old (used to be very active) my work has been greatly affected and am only working part-time now but even that is a challenge. I found myself completely incapacitated when I am on (period) each month about 1 day before and 2 days after.

This makes me feel so angry with the fact that I can't lift a finger or sometimes open my eyes it's like my brain is telling my body to move but my arms or legs are not responding. I am looking for support group, any vitamins that could help? I would like so much to hear from other people with the same condition.

Thank you

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minou104
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15 Replies

Good morning Minou. Hello and welcome. I am just about to go out, so i will just give you the link to our mother site for now and we can chat later. though i am sure that some other site member will be along soon.

fibroaction.org

Hugs sue

Ian123 profile image
Ian123

Support groups by area from the mother site fibroaction-public.sharepoi...

Oh forgot welcome :-)

minou104 profile image
minou104 in reply to Ian123

Thanks checking it out now.x

Ginsing profile image
Ginsing

Hello Minuo, ator

You have come to the right place. This site is full of really nice people who all suffer the un pleasent ness

of Fibro. You will usually see someone is on line and will chat with you about any problems you are encountering,

It is worth looking through our Mother site fibroaction.org where lists are available for groups and possibly one in your area. It is also worth reading the regulation then you will know what is allowed to be posted. Administrators who are all volunteers are on the site most of the 24 hours in a day so look out for us if you encounter problems and we will try and guide you through them,

Welcome

Ginsing

Asministr

minou104 profile image
minou104 in reply to Ginsing

Thank you for your response, I feel so lonely with this condition in terms of support and asking questions to people, seiing what works.

angelroses profile image
angelroses

hiya , i have had fibro for about 20 yrs.........ifor me ,i wont admit i have it.....and started doing yoga,which i found helps a lot......and a lot of walking....keep moving ,thats my answer whether your in pain or not.........try and ask your doctor for gabapentin.....its suppose to work wonders....according to my daughter ,who keeps telling me to go on it...

hope this helps a bit......angelroses..

minou104 profile image
minou104 in reply to angelroses

Hi angel,

Hi have been prescribed Amitriptyline but only took one tablet, it left my mouth so dry, also I don't believe in just taking anything which is not really for fibromyalgia. Looking for something more in tune with the body.

angelroses profile image
angelroses in reply to minou104

hiya minou,

its the hidden illness....so nobody can tell...i look has fit as a fiddle....so everyone thinks im fine.......

i take amitriptyline,when i feel its to much...but only a low dose.but take polo mints to stop dry mouth....i dont like taking tablets.....my son has fibro,full blown like me.....hes always complaining.......and hes on gabapentin....he cant do without them......other wise exercise is the best for me.......i was suppose to be in a wheelchair thru it......i came home from hospital and was really upset..so i looked for alternative answers.....i was sure it wouldnt beat me..and so far im winning........i do have bad days.....but the family think im fine so not a complainer....to live life to the best.......and try and stay positive......

good luck minou.hope you get the answers you need......oh and im new to this site only came on yesterday......

angel

schalkies1968 profile image
schalkies1968

Hi

I take Vitamin D and Vitamin B Complex every day after being diagnosed with Vit D deficiency and fibro a couple of years ago, apparently my body doesn't store Vit D. I find it helps. What helps a lot as well is the lovely folk on here because everyone understands and knows what we are going through.

Good luck take every day as it comes - the hardest thing I found is the acceptance of what fibro does to me, not being able to do the things I once could is frustrating but don't bottle it away come on here for a moan if you need to because the listening ears always help me feel better.

:)

minou104 profile image
minou104 in reply to schalkies1968

Thanks, it's true I feel like a good moan to evacuate the frustration, cause you can't really moan to people who don't have it as we look normal it's hard for them to understand. We look so normal...

Malwimmy27 profile image
Malwimmy27

welcome to the group everyone here is friendly and helpful 😊.

sorry to hear you've been so badly affected. I take Co enzyme a 10 I take one capsule daily, I have found it has helped with my energy levels, I also take vitamin b complex and magnesium 2 500mg once a day. I have found this combination helpful. I hope this helps. 😊 Becky. X

clare_hart profile image
clare_hart in reply to Malwimmy27

When my energy is low, I also use Astagalus extract you can buy at most health food stores. I will use a few different herbal compounds if I feel someting like a cold or other sick feeling coming on. Then I add echinacia and arnica, (maybe artichoke if my stomach is adting up) use lemon juice (purifying) and add these to a hot tea that is relaxing like chamomile.

I did a little google research.

I take Vit D because I get little exposure to sunlight, but it is known to improve your energy:

ncl.ac.uk/press.office/pres....

Like others said, vit B and co-enzymes can help:

webmd.com/vitamins-and-supp...

lily1919-j_r profile image
lily1919-j_r

I am a bit older than u and hv had fibromyalgia disorder for many years. I feel so sorry for you. It has nit got any better. Do you have family to support you?

Orangeblossom profile image
Orangeblossom

I find taking the mini pill to stop my periods helps with the monthly pain x

TheAuthor profile image
TheAuthor

Hi minou104

Welcome to the forum and I sincerely hope that you find it useful, informative and loads of fun! I am so sorry to read that you feel so unsupported and that things are very tough for you as a result of your Fibro. I can see that you have been given the FibroAction website link, so I will just say hello and wish you all the best of luck.

Take care

Ken

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