hi there i am useing this site for the first time i watched the programme on jo and was amazed to hear the symptons she suffers from are identicle to mine i sufferd for fifteen mths before they told me i had arthritis i have been on medication called methotrexate and i am on steroides every day but i just seem to keep getting worse this week alone i have not been able to move my left  shoulder the pain is so intense i sat down to write this message and now  i cant get back up it feels like my bones are broke my hands are very swollen and i suffer this pain in every part of my body it basically paralyses me any sudden movement is agony i feel now that when i sit down im scared  to get back up i am so fed up now its wrecking my future i am putting my family threw hell do you no or does any one no how i about getting my doctor to listen to me it just isent fair that so many women have to suffer with this i have gone from working full time and being fit to not being able to work at all i am only 42 and now i am lucky if i can get out of the house thank you so much tracey  

Hi, I agree that at present there is no cure, but from personal experience my life has been turned around from being a 'wheel chair' case and in constant stinging pain to now walking again and with only 75% pain (some painfree days per month), after reading Dr Paul St Amand's book called "What your doctor may not not tell you about Fibromyalgia" (Revised Version). It'll answer all the questions of anyone with CFS/ME and Fibromyalgia and is a MUST READ.   I wish everyone much better health and this book gives us all hope!  Best wishes, Nin

Hi

Thank you so much for your reply. I appreciate the information and must admit I had not thought of sugar being a problem. Unfortunately Ben is 6'4" and weighs 81/2 stone and when we go to the dietitician all they tell us is to increase all his calories!! Sugar and fat etc! Whilst a patient at Gt Ormond St. Ben was diagnosed with Collitus also. I am not sure about the help made available to others, but whilst he was a patient at GOSH we had help, now it feels there is nothing. A 20 minute telephone asessment concluded that Ben needed no help from the adult services. I was not allowed to give any information! I will get a copy of the book that you suggested and hope that you improve healthwise yourself. It makes me very sad to read everyone's comments on their suffering and also is nice to know that others out there are prepared to share their experiences. One very important thing that GOSH taught us was that talking helps!

I will let you know how we get on once we had read the book.

Take care and Thank you once again. 

hello everyone and tnx for yr replies, without going into too much painfull details, i've had so many different treatments, ie seeing what i call << loony hall>> people but all they wanted to find out was my so caled damn childhood, which is what i've been trying very hard to foget, what hurts even more never had support of any of so called family from time i remember, but was always here to help them whthere was right for me or not, and since became this ill, just total alnoe, i also have been dignosed with RA at age of 9, and recentley due to sever left hip and right knee, full body scan showd OA, on let hip, right knee and also tale end, all on top of FM, no wonder its no light end of this dark tunnel for me, i broght up Katie to enjoy life toghter, which is what i never had melsef, but when we both got where we wanted, it wasnt meant to be, even loony hall people said its kind of pain we cant help. so all got to deal with is pain, isolation, more pain, anyway sorry went on, but tnx for yr concerns and replis, best get off and rest elbows,as bit cold today and pain even more skyhigh.take care all.

 

Ellie

Hi Tracey, well done managing to post as much as you have, when clearly it must have been a real effort for you, with painful consequences........... However, hope is around the corner for you, as there IS a way to get better and return to being fit and active again, if you read my previous posting (Guaiernin).  Like you, two - three years ago, I couldn't move for fear of the stinging burning pain caused by the effort of moving around. The fatigue, sleep, anxiety,IBS and brainfog were hard to bear and I'd tried countless alternative therapies costing thousands of pounds, some of which only temporarily helped. Medications from my doctor did little to help and I kept deteriorating. However, as I say, if you read my previous posting as well, you'll see which book turned my life around and many of friends with CFS/Fibro.   I can now walk about the house again and no longer need a scooter indoors (didn't have the energy to self propel a wheelchair) and the pain is bearly there most days and even some days I'm painfree. Energy is increasing (for a specific reason which I'm not allowed to mention)and this has happened in only seventeen months after having read a book called "What your doctor may not tell you about Fibromyalgia" by Dr Paul St Amand. I urge anyone with CFS/ME/Fibro to read it as it will answer ALL your questions and give you the answer that you've been hoping for. You'll jump for joy when you read it! I did (well almost ha ha!)

My sister, Jane, suffered from fibromyalgia and ME for more than 10 years.  She was extremely ill and her life was very curtailed.  She had no quality of life and the condition was very hard also for her husband and daughter.  On radio we head about the LIGHTENING PROCESS - a new treatment for the condition. We told Jane about it and she received the treatment a month ago and now has her LIFE BACK and feels extremely well.

 

guaiernin:

Hi Ellie, I'm SO sorry that you too are suffering with this awful illness.

We been on the tablets (free on the NHS with a very supportive doctor) for over seventeen months now and Brainfog has lifted and I can now walk again! I

 

Hi Guaiernin

Would you possibly be able to tell me what the tablets you got free on the NHS were? - my doctor is quite supportive and I was just wondering so I could go and ask him about trying them -brainfog is a huge problem for me.

THANKS 

Sending best wishes to all out there who are reading this forum.  Remember you are not alone.........

kind regards

cat x 

Hi Cat,I'm really pleased that you too have a supportive doctor. Staggeringly 50% of doctors still think our illness is 'all in the head', even though they've been told by the World Health Org that it is a physiological disease and apart from American and some UK research confirming it, I know from private CFS and genetic bloodtests (in London) that this is true. I'm obtaining guaifenesin on a 'named patient basis' and can't believe how it's increased energy and got rid of all the stinging pain. I'm walking again! It's not as simple as just popping a pill though, as certain things have to be avoided in order not to block the effectiveness and so to be successful one MUST read the book thoroughly (mentioned in the above post). At the end of the book it lists an excellent support site in this country where we all chat and help each other on a forum like this, which is wonderful, especially for people who don't have any support from family.   The hypoglaecemic diet (keeping off sugar and carbs, bananas etc) and also outlined in the above book has made such a difference too and immediately decreased pain and stopped the 3am awakenings, which were obviously due to low blood sugar level crashes.  Alot of us develop hypoglaecemia apparently with CFS/Fibro. My IBS has gone too. Progress on the guaifenesin tablets (which are non toxic) is gradual, but in time I know that I will get back to normal on this life long regime and to think that this time last year I was crawling out of the shower (if I had the energy to have one) and couldn't stand for more than afew seconds!  Best wishes, Nin

 

Ihave been suffering pain for around 14 years now, along with brain fog, confusion, forgetfulness, ect, ect, ect... I was diagnosed with depression and treated accordingly, every doctor i seen didnt seem to hear me when i told them i felt like i had the flu and was in constant pain. I would often come away having cried because the examination was so painfull. after numerous x-rays, blood tests one doc refered me for physio, he said i had neuralgia, so that is what i have believed for 10 years.

i seen jo on telly and cried. everything she described was me. i hit the record button so i could show my partner, we havnt been getting along lately, he finds it hard to believe that sometimes even the slightest touch is painfull yet the doc cant find anthing wrong. i have gone from being a succesfull retail manager, full of life and energy, to week and feeble, struggling to cope with my 2 boys cant work and thinking i was going mad.

i cant tell you how pleased i am, i now have a name i can go to the docs with.

The 12 of May is also ME awwarness day. It was chosen because it was the birthday of Florance Nightingale who was thought to have suffered from it. ME and FMS are sister illnessess but reserch has shown they re not the same. The NICE guidelines produced this year have very little to offer long time sufferers of ME. We have long since overcome a anxiety caused but developing the illness , are not fighting any paper tigers, any fears and anxieties are all casued by the lack of understanding by others. We have learned how to cope adiquately without them shoving CTB and GET down our throats . It appears CBT is a cure all for every ill be it psychological or as in the case of ME-immune-neuro.

 

There are many many biological studies done that can and will lead to a diagnostic test and treaments of both illnesses but all are blocked by the MRC, goverment and NHS. These researchers need backing so we can like a more productive life and not have to suffer in silence. Dr Kerr is such a researcher that springs to mind. his work is published in prestigious medical journals in the USA and have been given excelent reviews but our MRC doesnt think its good enought to fuund while poory done psyciatric studies are given all the funding.  Rene :ME with FMS symptoms for more than 20 years...

 

 

Hello my husband has fibromyalgia and other problems as well we are on a web site for people who follow a certain protocol for taking a medication called guaifenisin (from America) this has to be followed up after reading the book that someone else has mentioned called What Your Doctor Did Not Tell You About Fibromyalgia.by a Dr Paul St Armund it is not a easy way to go but it does work. But it does take a while, it is not a quick fix.

This is a awful illness and it does run in families my 21 year old daughter is always suffering with pains and has IBS which I believe is all the start of FMS so we are going to start her on the protocol again.

We do not get much help from the medical proffession they all seem to think he is mad he has even been sent to see a phyciatrist to be told he is perfectly sane and that his problems are physical!!!

 

 

Hi Donna, I don't know how you did it (wish I knew), but I recieved a private e-mail from you for help, which was great, and also about the tablets (guaifenesin) which have been making such a difference to my pain and energy. Unfortunately, I can't seem to be able to reply to you...........the 'reply' just comes back and the link won't work either. I wonder how we can actually communicate? 

I hope cat7 reads this too and is able to join us too. We look forward to hearing from you both and anyone else who would like to see the back of their symptoms!  Best wishes, Nin

Hi Donna and cat, I keep having my posts edited. Please buy the book that I've mentioned in earlier posts and  look in the back of it for the support group in this country.You'll be able to contact me and many others who are recovering.  I keep having bits edited out of my posts eg web adresses. Odd that, when others can post such things? Also you could look at the american site of fibromyalgiatreatment and ask how to join the forum in this country? Good luck! By the way, I made a mistake in an earlier post that pain is 75% better now since taking guaifenesin. I meant 25%!!! Some days per month I'm even painfree and it can only get better! Best wishes and better health to all on this forum. Nin

hi unfortunately i missed the programme about jo guest wish i had seen it. ive had fms for about 8 years now and like everyone i have my bad days and good days, im still managing to stay in work though i must admit sometimes its hard.My dr has prescribed amytriptoline4 me but im wary of trying ang drugs that take over so to speak so i try n just take pain killers. I would be grateful for any tips anyone has to offer im determined this thing isnt going to beat me xxx

Hiya - I'm also posting this to reccommend 'Phil Parker's Lightning Process'.  I suffered rom ME for 8 years - severly from sep 2007-feb2008.  I am a PE and had to completly stop work. I couldnt move and my imbs ached so much i just couldnt move them. I did the Lightning Process in the end of January and I can not tell you how amasing it is! It has complelty given me my life back! It is truely amasing - i now have no aches and pains where as before I could barley walk due to the pains in my knees. Just 2 months on and i've been back at the gym, doing light exercise to get my strength back and i'm back at work on a phased return!

The Lightning Process helps all manor of problems ranging from illness such as ME/CFS/Fibromyalgia to anxiety and depression.  If used correctly as you do actually have to work for it to work then it will completly cure Fibromyalgia as it has done my ME.  I was sceptical at first, dont get me wrong as there are so many people waiting out there to con desperate people who will do anything to get better - but i cant stress enough that it is not a con-it is an amasing tool that has helped me get my life back! Please please please look into it!

hope this helps some people x