i wrote a lot more that this, whats happened???

Jay

hello

Thought you might like to know there are over 50, yes 50 Fibromyalgia support groups over the uk! I help to run a group and we have almost 100 members.Please go to www.fmauk.org where there is  information and help for this condition.Also a monthly newsletter is available from www.ukfibromyalgia.com which covers various topics. I find it very frustrating the lack of awareness of FM and feel sad that so much suffering goes on.It is a fact that only a fellow sufferer can understand how we feel and you will be surprised how many of us there are!Dont suffer in silence! The website at www.fmauk.org has guidelines for your GP on treatment and there are a number of medications that are proving very effective. This condition can make you feel very isolated and too fatigued to search for solutions. I look forward to your responses.

 Fibrofriend


 

hi Helen

Have just read your postings.I'm sure you will find the websites interesting and there are helplines available usually manned by sufferers who will understand what you are going through.The one thing that most people agree is that stress of any sort will make FM worse .If you have any specific queries please let me know,you can be sure that someone in our group has had experience of any problem! 

The constant pain and fatigue can make you feel as though you are going mad, but you're not and things can be improved.Keep cheerful!

regards

Marilyn 

hi marilyn thanks for your reply i did just as i said last nite and looked on the fmauk website. i dont go on the internet very often and when i do i spend little time as i also have carpal tunnel in my left hand so it hurts to type most of the time. when i do it is normally evenings as i am very tired during the day as i suffer sleep deprevation as i am in so much pain at nite,in pain all the time but after looking after the 4 kids and trying to do neccessary daily chores it is worse at nite.i will draw to a close now but thankyou so much you have thrown me a lifeline a new purpose to keep hoping, speak soon, regards helen

I tried to contact the program yesterday but had no luck.

My story starts about 37 years ago when I was 7. I was always "headachy" "weak muscles" "funny sight" and was always told it was just me !!!  It never stopped me doing anything got all my exams ,swam for the county, a lot of fell walking and love camping.I am married and have 2 children and most importantly a VERY VERY understanding husband.When I was 18 I was diagnosed with intracranial hypertension and eventually had a shunt fitted,this seemed to take the edge off some symptoms which was good. I then had both of my carpel tunnels operated on and again gave some relief. Life went on having good days and not so good days but got through with the support of family and freinds.

UNTIL 5 years ago when I started to feel just awful went to my G.P ( who has been very supportive) and ended up having a mass of tests colonoscopy,endoscopy, scans for fibroids,barium swallows the list goes on. All came back inconclusive passed around from department to department with no answers. In the mean time I started having real trouble concentrating making work difficult getting very angry and lashing out at people I have severe anger problems now and have isolated myself from "the real world" because I really don't want to hurt anyone.I no longer work or do any of the things I used to NO camping,NO socializing,NO cross-stitching,NO patchworking NO fun !  I have also had a heart attack and a blood transfusion and have now been diagnosed diabetic.

18 months ago while in hospital having the blood transfusion I met a doctor who specializes in PAIN he came along asked a few questions then prodded me nodded his head and said "good news I know what it is! Bad news not a lot we can do for you !! )

the diagnosis was FIBROMYALGIA the relief that it had a name and I wasn't compleatly mad was great. My problem now is trying to get to grips with pain managment and more importantly my mental health both of which I am having difficulty with.

I have lost a lot of freinds over the last few years because they don't know how to deal with me,but the ones who've stuck it out have got me this far and without the understanding of my brilliant family ( who all have issues of their own) and my "so laid back " husband who takes everything I throw at him( sometimes quite litterally) in his stride; I would have ended my life. As a team we plod on we can only keep trying medication & therapies & hopefully get some relief but the biggest help is support and a sense of humour and as yet I haven't quiet lost that,yet!!!!

Please ask Doctor Chris to do a program about FIBROMYALGIA and bring it to peoples attention and I would just like to thank you all for a brilliant show and a special thanks to Fern & Philip who sometimes when I'm having a difficult morning just give me enough of a giggle to get motivated.

HI I don't know your name but you are the lady who's symptons started when she was 27, this is around the time I developed my joint pains and I assumed I had Rhuematoid Arthritus which my Granny had and this frightened me as my Granny was terribly twisted and in such pain.  It didn't get a lot worse thank God and I have learnt to cope.  But what you wrote about your anger touched me because I have become very lonely for this very reason.  I have 3 lovely children who are grown up and they go everywhere together but I have made excuses so many times that now they don't even ask and I have watched them all go out chatting and laughing while I sat alone playing solataire.  Lately, I have been making a huge effort to control this anger and agression by reading books etc. I'm getting there .........slowly.  My sister has Fibro and she installed a running machine in her kitchen and she does her hour on that every day no matter what and it has made her more active and in less pain.  I feel for you as you have suffered a lot and I hope someone will highlight this affliction.  We may never find a cure but listening to others and trying some of the things they suggest can help you launch an attack and fight it all the way babe..........   x Beutross

beutross:

I watched Jo Guest on This Morning, does anyone think she may have a form of Fibremyalgae?  I developed symptons following the birth of my youngest son.  Firstly, I came down with the worst flu I have ever had and spent 2 weeks in bed, this cost me my job and I spent 2 years on sickness benefit because I just couldn't pull myself together.  I seen Specialists, including a renowned professor and no one could find anything wrong, apart from my liver wasn;t as efficient as it should have been.  I was told to lay off the alcohol (I don't drink).  20 years later, I have still not had a diagnosis. I have had numerous lumps removed and the biopsy indicated discoid lupus.  My joint pain has been somewhat controlled by a magnetic bracelet, although  I still get attacks where my stomach bloats, constant bowel movements, head and neck ache, itchy lumps all over my head and shoulders,and the hip and knee pain has all but immobilized me, sheer force of will gets me up in the morning as it is much worse if I stay in bed.  I haven't had the test for Firbromyalgae as I am told there is no treatment and therefore no point but I could have it if I wanted.  I just call it Fibrolupisme Disease because there are so many similarities in this sort of illness and Mine just doesn't fall into any particular one.

Hi,Further to my other postings I feel that I must point out that there are medications available for the relief of symptoms as well as various vitamins and complementary therapies that would help.A sympathetic GP is a great help and the goal should be to create a personal treatment plan for you as FM has so many differing symptoms(no need to tell you that!) If you have'nt had a diagnosis from the rheumatologist it would be a good step or a pain clinic.Other helpful ideas would be The Expert Patient programme which is run by people with chronic pain etc.This may not be available in all areas.

 Please do not carry on suffering,there are things to help.This is a short note as I have had a dodgy tummy day(the visit to the dentist didn't help - aching teeth and jaws-FM again!) Hope to hear from you again.

Marilyn 

Hi Fibrofriend,  I agree with you about being too drained to look for the help that could make life more bearable, but there is help out there, i too run a support group which i started less than a year ago, i was going through a pain managment programme when i realised there was no local support,  I have a group running  in Derby, we already have about 60 members registered with us and have changed the lives of those who were feeling isolated. If you live in the Derbyshire area and would like to meet others with fibro or fibro related symptoms, derbyfibro.co.uk  .  I am currently working with pain clinic staff hoping we can come up with a solution, to give the fibro sufferers the information they need when they walk away after being diagnosed.

derby fibro

Hi i have just read your message, i have had fibro for 2 years and have started up a support group with the support of my husband and newfound fibro friends, its easier to talk to them as my family dont understand how the fatigue cant be fought.  

I'm not sure if there is a support group in your area, but if you like i could find out. 

we're there if you need us

Jackie

Hi,

I've had FM for several years, and have been prodded, poked and internally examined from every angle by the Rheumatoid doctors - it's all pointless in the long run as they can't do anything to help, apart from suggest stomach rotting anti-inflammatory drugs which stop working after prolonged use anyway.

In fact, every time I went to see one of them, I came out in agony as all he'd do was poke me in all the tender points just to see if they still hurt! I felt like poking him where it'd hurt I can tell you.

3 years ago, I had trouble functioning normally. I worked full time, and that's all I could do and had to have lots of time off sick. My weekends were spent trying to rest in order to get through the week.

Luckily I was able to stop working, and concentrated on learning some more complementary therapies (I already did Indian Head massage as a hobby) at a pace I could cope with.

One of these has been my saviour. The Bowen Technique should be available on the NHS for all chronic pain or other long-term conditions. Thanks to receving it regularly (well, after 3 initial sessions 1 week apart I now go once every couple of months when needed), I am able to run my own business - a therapy clinic - where I use Bowen and other treatments, to help others who have put up with pain for far too long.

I can't recommend Bowen strongly enough - it has made me able to feel almost 'normal', with rare 'bad fibro days' if I overdo it by trying to do some decorating or something overly strenuous.

Be prepared for 'feeling worse before feeling better' - it's called a 'healing crisis' and will go away. Don't let it stop you getting the 3 weekly treatments, as that's the optimum for long term relief. Anyone who tries to get you to go week after week, month after month should be avoided - it's not necessary.

At the end of the day, all we have to lose is our pain/fatigue/brain fog!

Hope this helps.

CC

Hi , I have FMS and have had it for a number of years now along with other cronic illnesses that come with it or because of it. The Expert Patient Programme helped me a lot, and to be shown by people with a long term condition made it all the more setteling, not some NHS nurse telling me to " buck up " that was over 3 years ago when I went on the programme and now I am a tutor for the EPP, but please dont forget that the EPP is for ALL conditions and has helped a lot of people over the years. FMS is liverble with if you have the right tool's and a wish to have a almost full life. I'm not saying that i can now swing from the chandlears but even with the medication that im on i'v got a quality of life that keeps me going, ok some days i dont go out of the door and i can't remember my hubbies name or my son's, due to the " fog " but they have a great time trying to guess what im getting at and NO i dont mind, It makes me feel better knowing that I can still giggle at my self.

If i did'nt look a life and think " your not getting me down " I think that I'd have done something verry silly by now, with the pain and all of the tablets and the messing around from Doctors, poking and proding me like a cooked chicken, beeing told " it's not real it's all in your mind"  No it's not, it's all over my body , in the end with the help from the EPP I can now communicate with health professionals and get my feeling's across without feeling intimidated.  So thankyou for putting the EPP in your e-mail I do hope other's take up the course  and it's Free.

                                               lyn