Tips for coping?

Take pain killers of course, but the real key is pacing yourself day to day, knowing when to rest and when to try to do something that is hard - my wife Mary who has had FM for 15 years swears by the pacing route.

Even then you may find bad days you can do little and do need support or a carer to do most things for you.

The tough part is if you are still working, BUT have to take time off, and then the job is at risk. For most this is downward slide to a time you cannot work at all.

Finding a local support group helps a lot as you meet other with the same problem and get ideas and feedback as well as friendship, it does tend to be a lonely condition as some folk do not understand it, as often you "look well" when you are in fact racked with pain..

There is a lot of info on the WWW but some of it is confusing and designed to sell you "miracle" cures, be wary, there are treatments that work for some, but not others so its trial and error for you too,  

 Good luck

Maurice

 

Hi everyone,

I live in Southern Ireland and am finding it difficult to get corvalen and bimuno. does anyone know if I can get it in Enniskillen(northern Ireland) not far from where I live or if I can order it on line from uk(all I have found so far are american sites)

I have fibromyalgia for over 2 years now and it set in first in my elbows after a viral infection called  "labryinthitus" middle ear infection.

Presently on lyrica for pain relief.some success with accupuncture and accupressure massage.

Hoping to try the "Bowen" theraphy this week.

I dont intend to let this condition beat me!!!

I am a single parent and self employed as a bed and breakfast operator.

I have adjusted the business to suit my restricitions and have a cleaner who comes in twice weekly or more if I need her.

Its a very lonely and isolating illness.I am not in a relationship and feel too embarassed by my bloating and weight gain due to inactivity to even contemplate one.

Even though my friends tell me I look well,I know I used to look better. I tend to withdraw when I am feeling bad and then overdo it when I feel ok.

Not as high profile an illness in Ireland.

Any support,advice,etc,greatly appreciated,

Hope to hear from someone.

Hi, I emailed This Morning and asked about the 'sugar' Dr Chris mentioned helped with energy for Fibromyalgia and ME sufferers.  They replied with the following: Corvalen www.glasgowapproved.com .  Always see your own GP for Advice.

hello everyone, sorry not been round, but once pain in control, that's it, am just crying with pain at the mo, anyway re, them tabs dr.chris mentione on the show, if u go the other website wihch is linked to this morning site, it tells u that it's not cure n only helpes with energy, but no mention of it bieng helpfull fo FM sufferers, also i've had me posting NOT been posted, wich they let us say our saying, anyway,  on that site it tells u that there were some points which were misleading for us n they working which this morning eam to sort them!! hope this posting get POSTED, anyway take care all , chat soon. just dont waste your money on them tabs as they's not really for us YET,

 

Ellie

Hi Moonrose I am sorry to hear you dont get incap benefit. I was working and when pain got to much to continue working I was signed off work sick this went on for over a year but after being on sick pay I then recieved incapacity automaticaly and have had it ever since. I have to re-apply every 2 years but have had no problem getting it. I also get disability living allowance. This was a nightmare to get and it took over a year the first time and I had to appeal the refusal but the welfare rights people helped with this. I would keep re-applying for it and if you needed any help I would be happy to give it. I would be happy to email or speak to you on the phone as I was very lucky the dss helped me to fill in the forms and you have to put everything down as if it was one of the worst days and not a better day. I was granted my DLA last year for the third time and this is the first time I didnt have to appeal. Hope this helps and let me know if you would like help with the forms. We get little enough with having to pay for all our meds and get on with life as best we can with no real help for our pain. Hope life gets better for you Donna

Donna! I'm SO thrilled that you're going to get the book (mentioned in my posts on page 9; the 12th April, at 1.06pm & 7.06pm). It's doesn't cost much to buy and you'll realise that it will be the best investment you have ever made in your life since developing Fibro', after you've read it! I feel eternally grateful to my chiropractor who gave me the dvd and the book. I see him regularly for 'mapping' (explained in the book) and he's astonished at the change in my muscles (since taking the tablets) and it confirms the rapid progress that I'm making which shows in the increased energy for walking and the lack of muscle 'burning' and 'tingling' !!!!! I'm  walking around the house again now (not using my scooter indoors), doing little Spring cleaning jobs at long last (my house resembles the Adams family!), the occasional gardening (kneeling or sitting) and am using my mini scooter only for trips out or shopping. Obviously I still have low energy days, but instead of feeling ill and in pain all the time, the good days are gradually increasing, as it predicts in the book.

  I just hope that Ellie, Moonrose, Maurice, Preciousjewel and anyone else who is suffering from this awful disease, will buy it too, as you wouldn't believe how guaifenesin and a sugar/starch free diet has made such a difference to my pain and fatigue. The support group by the way Donna, is on-line! (web address at the back of the book). It's brilliant, as we all chat & support each other whilst gradually getting better on the tablets. Take care to rest enough to build up energy, put your feet up and start reading! Love & best wishes, Nin

Hi, I would not recommend Di-Ribose (Corvalen) to which Dr Chris referred. I took it for quite some time afew years ago and not only did I find  it very expensive and ineffective (for optimum results, research dictates that it should be taken with other supplements i.e. Acetyl L carnitine etc) but it actually worsened my pain. I have since found out why all sugar (of which this is one) will cause more muscle pain in a large proportion of Fibromyalgics by reading Dr St Amand's book "What your doctor may not tell you about Fibromyalgia" . It all makes perfect sense. May I suggest you too read this invaluable book and stay off sugar!  Nin

hi there, my son suffered from a very rare disprder on january. i was wondering how do i put a post on here so i can make people more aware because i cant see anything where it tells you to post

thank you

rachel

Hi  this is the first time I have visited this site, and your post caught my eye, Im 35 years old I have suffered with fibromyalgia for 7 years now I have also got M.E IBS and have just had major surgery, I have thow members of my family SLE and other autoimune illnessses, I did strugle to work for the first 2 years but in the end after being off sick for 12 months my work had to let me go, some days Im not bad but then others Im terrible, as your aware yourself, there are no support groups in my area, and just to speak to someone  who can understand how I feel,. take care. hope to speak to you soon. p.s it also LUPUS day on 14th May.

keisha in Health
Subject: Re: Fibromyalgia Awareness Day
" there are no support groups in my area, "

I am founder of a supoort web site and also of a Rugby FM support group with about 30 members, there are some 250 support groups nationally and on our site we have a page about starting your own small group to join up with fellow sufferers - it does help. If I knew where Keisha or anyone else lived and was interested in finding a group I could help.

As  newbie to this board I am loathe to post the URL as some of my posts have already been refused for various "sins" I have committed - you can track the URL via my profile, and my post is out of genuine interest to HELP others - BTW I am carer for my wife Mary who has had FM for 15 years.

Maurice

 

 

hi fibrosupport, i live in Cambridge n am a sufferer of this damn illness since 2004 which was dignosed but goes back long long time before that, i live with my daughter so wen whes at work i'm so on me own n never ending pain, no family or friends so u can imagine life , if its called that, can be even harder, so just wonderd if there was support group in Cambs area as cant travel to any towns or cites around, so be greatfull if u can let me know pls, tnx.

 

Ellie

hi my name is jeni and im 27 and iv been diagnoised with fibromalgia and chronic pain syndrome and its took 4 years. i also have ibs and some other problems ,its nice to hear im not alone i feel that living with this is very hard and i do feel alone and it is hard for people to understand the condition and alot of people have not even heard of it . i try my best to work but its hard to get through each day with having 2 children aswell and can only work part time now and im not the same person any more . its been nice reading all your messages take care

                                                             love jeni x
 

Hi I have been emailing my local MPs and MEPs to get them to go the the Awareness day, we need as many as possible to attend, for more details of this go to fmauk.org.

I was diagnosed with fibro last year after suffering for 22 years yes I said 22 years this is why we need the awareness say so more people with this condition do not have to wait quite so long , I took my little girl to the GP and mentioned that I had finally got a diagnosis of Fibro and she said " oh well fibro has only been popular for the last 5 years" I thought to myself well that does not really matter, the fact is I have had this since I was 12 years old and was always told it was in my head or that were sorry we know your in pain but there is nothing we can do about it.

 I have created a website where we can all talk about how we feel and help eachother get through the bad times and have some fun aswell as there are a few games on aswell, there is a suggestion page and a free for all page, the address is fibrofriends.piczo.com please take a look and see what you think, I also belong to a fibro group, we have meetings every 3rd Wednesday of every month and these are nation wide, I will try and get a list of where they are from our leader and post them on my site.

 Lets hope we get enough MPs and MEPs to go to the meeting and get Fibromyalgia more known and funding to research it more maybe even find medication that really works for the pain.

Please all write to your local MPs MEPs the details are on my site and fma site.

Hi preciousjewel, I'm really sorry that you're on your own and struggling. I tried Bowen a couple of years ago for Fibro and found it very effective. I'm on a treatment now and the pain and fatigue has lessened considerably, so I don't need it. My husband also had labrynthitis and so I know what you're going through! Not pleasant. I'm still not sure how to e-mail you privately through this website? Donna managed to mail me the other day, but I wasn't able to post her back (undeliverable apparently!), so if you or anyone else reading this can give me an  I.T. lesson, I'd be very grateful! 

 Did you see my post by the way (afew posts further back) regarding a book written by Dr Paul St Amand called "What your doctor may not tell you about Fibromyalgia" ? I'd like to be able to tell you how and why I'm getting better, but will probably have slapped wrists if I do! However, if you read the book preciousjewel, it'll be the best thing you can possibly do in order to find out 'why' we have this damned illness and also 'how' to recover from it. At the back of the book it'll tell you how to join our ever growing support site (900 of us) in this country alone, where you will be able to make loads of friends and be supported whilst recovering. I hope you feel better tomorrow. Go buy the book! Love Nin

hi i've just joined the site, i've had fibromyalgia since 2001 but it took a year for someone to tell me what it was.  I was so glad when i was at least given a name for how i felt, a lot of people tried to make me feel like it was all in my mind.  I can asure everyone our pain is more that real.  sorry to hear the comments yr mum made about 'doing things when it suits you' .  We tend to look ok on the outside so they seem to think we're either exaggerating or faking it.  All we can do is take each day as it comes and do things when we have the energy.

Don't let anyony put you down we have enough to deal with without taking on other peoples comments.  My son bought me some beads from the chemist, its like a small pillow which you put in the microwave for a couple of mins. If you put the heated beads on your stiff bits it helps to ease the pain. (does wonders on my neck).  All the best xx