Hi I was diagnosed two years ago with Fibromyalgia and an underactive thyroid and was so pleased to see Fibro getting coverage on tv. I take Amitriptyline to help me sleep (doesn't work very well though), Feldene for the pain and also Thyroxine. I have just ordered Corvalen as recommended by Dr Chris Steele as I am having a dreadful flare up just now partly due to a lot of stress. I live in Winchester, Hampshire and a new support group has just been started here. I am amazed at how many people have this awful condition, it is so debilitating.

Best wishes to all fellow sufferers out there and I hope Jo soon starts to feel better too. 

 

Hi,  This is the first time I've done this and I'm not sure I'm doing it correctly.  I'm the mum of a 19 year old daughter who has been suffering from FMS since she was 8 (only diagnosed when she was 11).  We have taken her everywhere, spent thousands of pounds trying to find a "cure" to no avail.  Painkillers and amitryptiline type drugs do not work.  My daughter is under the UCLH in London, who acknowledge that painkillers and other drugs don't work as the autonomic nervous system (the one which controls the things we don't need to think about - like heart beat and breathing) is the one which is affected, not the normal nervous system.  I have done lots of research over the years and recently came across a Chiropractic doctor in the US, who said the problem is with the 1st vertebra being out of alignment, causing pinching of the nerves from the spinal cord, which in turn sends incorrect signals to the brain.  I almost took her to see him, but after researching former patients of his on the internet, found his results varied too much.  He has also written a book about FMS but has negative feedback removed from Amazon.com, which made me think he has something to hide.  I also contacted them with a list of questions which were not answered for 4 weeks and then only with Yes or No answers which only reinforced my thoughts that he had something to hide.  My daughter has always thought her pain was caused by her spine as this is where it is at it's worst.  Putting 2 and 2 together, I decided to take her to yet another Physiotherapist to establish if her vertebrae were out of alignment.  Guess what?  She had 2 out of alignment in her neck C2 and C5.  The physio has been manipulating the vertebrae back into the correct position and my daughter has been doing exercises to strengthen the muscles and ligaments in her neck and she has improved so much.  She is a student and is currently receiving Disability Living Allowance....  I was wondering if you could also benefit from this, especially as you are not able to get Incapacity Benefit?

I get mine from www.bodykind.com - this seems to be the cheapest. It is also called D-Ribose- I found out about it back in Jan whilst trawling the net for any new research into Fibro. It really seems to work for me AT THE MOMENT. Ive been suffering for nearly five years - tried everything under the sun - had every test under the sun. I think a combination of things work for me but everybody is different. Also take Activive. I think Ive always had it slightly as even as a child I suffered and was told it was growing pains, but have always got tired very easily. Hit me with a vengance whilst doing a degree as a mature student aged 50. Prior to this had quite a stressfull few years. Only my husband and I know what Iv been thru - as I hibernate when really bad, and put on a front other times because most people arn't intrested. Even good friends don't understand. Even doctor said I felt ill because I was depressed NO I WAS DEPRESSED BECAUSE I FELT SO ILL!!! TO EVERYONE READING THIS .......... try D-Ribose - when you feel like we do anything is worth a try.

Hi - I too Sometimes have difficulty swalling and often choke on food - didn't even think it could be connected to my Fibro. As you say this blog is great as it makes you feel less alone. Ive just replied to someone else saying D-Ribose has helped with my pain and tiredness, so if you havn,t tried it do so. Its a bit expensive but anything that helps is worth it.

Regards

I was diagnosed Five years ago with Fibromyalgia,

I am 42 years old,happy married with two children age 16 and 14.

I was pleased to see Fibromyalgia being coverage on This morning today,

I am having a very painful flare up at the moment, I can`t move due to a lot of stress myself.

 I live in Rugby a support group has just been started up here, but I haven`t been well enough to go at the moment, by the end of the day i have just had enough with the pain. I have also got a underactive thyroid and Fluid on the Brain which i have had now four times, this has weaked my leftside and also where the lumbar puncture have been in my back (11 of them) can get very painful, this doesn`t help with Fibromyalgis.

I just wished people understood how you felt and realise what pain you were in, but because you can`t see how bad you are feeling, they can`t understand the same, when you can`t do the things that you could before

Best wishes Jo  . 

 

 

Hi J

 Thanks for this.  I was able to see This Morning and a friend who had the morning off phoned and told me about it.  I will be following up what was said, but in doing so I can across your post.  I have this problem sometimes and since I have also had asthma since birth it is particularly frightening.  I didn't realise it was related to the Fibro so thanks for that. 

 Rgds and good luck

 SuP

 

 

Hi, ive had fibromyalgia for over 2 years and i feel completely let down by the medical profession. im a single mum with 5 children ranging from 16 yrs to 3 yrs and this is hard work at the best of times.  i reached my lowest point a couple of months ago and decided to try magnet therapy and vitamin and mineral supplements.  i bought some cheap magnetic jewellry from ebay and i also take multi mineral and vitamins supplements, serrotonin, magnesium, calcium and b vitamins. ive just ordered some co-enzyme q10 but im going to try the D-ribose too.  i have felt much better since i started this, im off my painkillers except the odd paracetamol and i have more energy but i still feel extremely tired.  this seems to be working for me at the moment and im feeling much more positive. ive still got a long way to go but at least things are improving.  i researched magnet therapy and found that most of the products were too expensive so i decided to try the cheapest option, not expecting it to work, but it has, i wear a necklace and bracelet all the time and only take it off if i go out somewhere special.  hope this makes sense.

take care all

 

sarah xx
 

Hi ,

 I also get excited when I hear anybody talking publicly about fibromyalgia!! I think "Yes I am not on my own!" My mum rang me to watch Dr Chris on Good Morning. I am glad I did but when he tested for the pressure points I winced- how painful that is!!  It can be a very isolating condition and the support mechanism, from the NHS, seems to dissolve away once you have been diagnosed. I worked as a nurse lecturer and have had to give my career up because of this condition. It can be so frusatrating!!:( However, I now try to see the positives and each day pamper myself and work with the pain and fatigue and try and achieve something which makes me feel useful!! It is not always easy in fact it is a struggle every day! I was diagnosed about 4 years ago, am now on Amitryptylline 50mg at night to help with sleep and as a muscle relaxant. I also take pain relief, but not sure at all if it has any effect! I use water -alternate hot and cold to help me move at the beginning of each day, this is just in my shower!! Then I gently massage with lotion but very gently and try stretching excercises. To be honest sitting still for too long makes me more stiff and after sleeping all night I feel ninety!!!

I would love to hear from anyone who suffers from Fibromyalgia in the Bromborough, Wirral area who would like to get together on a monthly basis! I have several fellow sufferers locally and it would help us all as some cant drive to the local hospital for the official support group! xxx

Hi Wendy

We have a support group in Christchurch(The Christchurch and District Fibromyalgia Support Group) and have been running for 11 years.We have members covering quite a large area and have regular meetings and social events.As a group we put awareness as one of our main aims and having nearly 100 members we have heard of about nearly all the strange symptoms that this conditions can cause!.It does seem that as far as treatment for FM is concerned that everyone is very individual and you must persevere to find what suits and find as much information as possible.It helps to find someone who has tried something and can recommend it.

Look forward to hearing from all fibromites and dont give up!

Kind regards

Marilyn
 

Hi I dont know if I am doing this properly I saw the fms on this morning thanks to a friend and its the first time I have heard my condition spoke about on tv. Have never heard about the corvalen before and wonder how successful it is am fed up trying things and spending loads of cash not knowing if things will work. Does anyone know if this is ok with all the meds most of us are already on.

Hi, I'm new to this but felt I had to send a message after seeing the interview with Jo Guest. I have over the years been sent for all sorts of tests all of which have come back negative, I feel I have been to Hell and back trying to find out what is wrong with me. Only a couple of days ago I came upon an article about Fibromyaglia, so imagine my surprise this morning. I have been very ill for years but my husband is coming with me to the doctors to demand I be treated for this. Over the years they have told me that it was depression. Thanks Good Morning!

Linda X 

I know how you feel it is good to hear fms being talked about. I have been coping for nearly 14 years with fms. My problem is my meds have been increased over the years and am now on pretty much the max daily amounts. I take 200mg Amitryptyline every night and am struggling to get to sleep I use a tens machine to help. I went to my local support group and felt so out of place most of the people were older. I am 38 so felt we had little in common other than our fms. At the time I was hoping to find out if anyone was on different meds so I could try something new but didn't find anything new. I take 8 tramadol and 8 co-codamol and 2 - 4 ibuprofen and am still climbing the walls with the pain. I would welcome any suggestions from anyone. I use a tens machine and have accupuncture from my GP every couple of weeks. I have 2 children and my husband but hate having to say I dont feel up to going out or doing anything. But dont know what else to try.

hi Marilyn

Thanks for your reply could you tell me were and when you meet. I would love to meet up and talk to someone about this as my family cant really understand what i am going through

 

kind regards

Wendy

Hi , Im not good at this type of thing but i really need advice . For the last two years i have had a lot of problems with tiredness and fatigue . I have had really bad sleeping paterns and toubles getting to sleep . in the last year and a half i have started acheing and haveing very painful clicking joints . Plus my left side of my back and shoulder joint is so painfull i am finding it harder to get up every morning . I have about four points on my back if touched cause me a lot of pain all thru my body . The problems iam getting now are clicking in the neck and headaches but mostly all on my left side. My knees ache so bad even after five minutes of walking . I have seen the doctor and chriopractor , My doc told me he thinks i may have depression or iam stress because all my blood test came back fine.

About five years ago i injured my knee badly having many operations on it which stoped me from being so active and athletic as i was. Also because of my tiredness i lost a girlfriend due to the fact the only energy i had was to sit down in front of the tv.

All i want is advice because i am so down with not knowing why even after a lot of sleep i cant move. Im sick of people telling me its all in my head and iam just plain lazy . I want a life but i cant move without being tired .

You can find a list of medications that are used for Fibro here