Hi,

    I know where you are coming from. I was diagnosed with M.E in 1994 whilst at uni, and diagnosed with fibromyalgia 5yrs ago. My son was 4 yrs old when I was told I had M.E  and being a single parent I too felt guilty and very sad that I couldn't do the things other mums could do. I tried to find ways to get around it by spending time with him in other ways rather than running round etc. I even sat on a chair in the garden and kicked the ball to him whilst he was in goal, making things, baking and picnics etc. My son is 18 yrs old next week and I asked him how he had felt growing up and he said I only remember the things we did together not the things we couldn't do.He went to cubs, swimming lessons etc too. I find that I get more side effects from medication so now i only take vitamins particularly amino-acids, I found i was eating too many sugary foods, they were convenient but made me fatigued, I also try to eat more protein. I also find that gentle massage particularly my neck, head and shoulders helps but I know this is not suitable for everyone. Speaking to others helps to know you are not alone, I have just attended the 6 week expert patient programme which helped with coping strategies particularly dealing with stress which is the main trigger for me.

Hi its really good to know when you feel so ill and  in pin you are not alone and some things that may be happening you dont even know they are connected it would be good for more people to understand this illness  regards Linda

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 have 75% less pain with many periods per month of being painfree. I have more energy and no longer use my scooter indoors and the days of severe muscle burning are over thanks to this treatment. I will keep improving with time and become totally painfree (like others) and walk for long distances again. It's not a quick cure and must be taken for life,as it gradually rectifies the physiological cause of the illness; a compound retention problem in the body (similar to Gout) and which is affecting the production of energy.

Hi Everyone,

 I have just read and watch part of the interview from yesterday, i wish i saw it but i busy a a fibro support group meeting!!! It is really great to see this condition getting this exposure on T.V. the more people that get to hear about this condition , the easier it will make things for people like Jo and myself, and many many others. I have been diagnosied for 3 years now but it was only last year that i found out local support group, which has been the best thing i have done to help myself , as they have given me the support, information about treatments etc as well a someone who i can talk to who understand eveything that i am going through., but most of all i no longer feel isolated.

 Hugs

 Anne x

 

Hi

I am not sure how to do this, I hope that you will all bear with me. I watched the interview with Jo Guest on This Morning yesterday and in particular was interested in Dr Chris showing the 'sugar' available from health food shops, that has just become available if I heard him correctly. Does anyone know the name of it? I hoped to find it all on the website for This Morning, but cannot seem to find it. My son has suffered with Chronic Fatigue since the age of 10 years and is 22 years next month. Some of the symptoms described are so similar but he has only ever been diagnosed with CFS. The headaches alone are so debillitating without the joint pains and tiredness etc. If anyone remembers the name and could post it for me I would be grateful. I hope that I have done this correctly and look forward to any responses. Thank you.

Take care 

Kind regards

Elaine.

Hi Anne, I have just joind the furom today after my son told me about the programm yesterday, I missed it!  Its great that people are being made aware of this condition.  I have sufferer from it for 12 years now, and no day is the same.  Some are good and Some are BAD BAD BAD!!!! but some how i get thro it.  I have been reading some of the comments on this site, its amazing how may people sufer from this condition.

 

Well i just wanted to say hello and let you no your not alon.

 

Hope your having a good day :)

 

Jan 

Hello Ellie,

 

I just joined the furom today and read your post :( I understand how you feel,  I have fms and like you it was pushed aside for many years.  Dont let the "no cure" phrase get you down.  I no there are days when it seem pointless carrying on but hey...look at what you have acchieved whils having this  horrid problem.  Yuou mention you have a daughter...well being a mum is the biggest achievment ever.  So pick youself up brush your self down and dont let it beat you EVER!!!!

 

 

(((hugs)))  gentle hugs that is lol dont want to hurt you

Hi Hopemum, how wonderful your son must be to see only the positive side of his growing up! I'm sorry that you've had ME so long. I agree that stress really sets us back, but then as CFS is an energy problem, the brain uses more than any other activity and so it's not surprising. I agree with you as regards cutting out sugar and starch, as this definitely affects energy and increases pain. I follow the hypoglaecemic diet and it's made such a difference! As you say eating protein is good for energy and eating regularly every 2 - 3 hours. I developed ME in the eighties (when my children were small) after Glandular Fever (a known trigger) and luckily recovered 90% until Dec 2003 when I had an allergic reaction to anti-biotics (another trigger, i.e. physical trauma) and then quickly deteriorated with severe CFS and painful Fibromyalgia (another symptom of CFS). I replied to Ellie about a treatment which addresses the physiological cause of our illness and has turned my life around, as I'm walking again now and pain is minimal with some painfree periods each month. However, the moderators cut out most of my reply to Ellie outling it. I thought this was a country of free speech? Obviously not!

Can you tell me the name of the tablets so as I can ask my doc about them. I would welcome any suggestions from anyone as I am going through a bad patch. I was hoping the This Morning website would have had more helpful things for me to try. How do the tablets help with the fuzzy heads and no memory. Friends and family now laugh when I cant remember the names of things and forget I am supposed to collect my son from school for a dental appointment. I have to set a reminder on my mobile for everything or I will never get anything done. Donna

Hi Chatterbox, Sorry to here meds are'nt working for you, not many do and everyone reacts differently to different drugs unfortunately.  Have you tried amtripyline?  I take this very night and I can honestly say I have a better nights sleep, don't seem to feel the pain or wake up everytime I move through the night, unfortunatley I still feel about 90 when I wake up, and stiff as a board!  I take a low dose anti-depressant through the day citilapram only 10mg, so it doe'snt wipe me out, but helps with my anxiety and depression, the only pain-killers that take the edge of alittle are co-codomal for me, I've tried everything else.  I feel so awful at the moment, I hurt all over and feel like screaming and shouting, so I've just locked myself in the bedroom.  How are you today?

Hi,

I also watched the ITV 'This Morning' program yesterday as I was very interested in the Jo Guest mystery illness.  Although I have not been diagnosed with Fibromyalgia, my illness was finally diagnosed, by a specialist at the Southampton M.E./CFS service, as M.E./CFS.  I was told that these illnesses are very similar and it is possible that I could have Fibromyalgia.

I have now had this illness for 3 years, and luckily I am quite mobile.  However, my energy levels are quite low and I find that i am out of breath very quickly if doing anything physical.  Even bending over to put sock and shoes on will make me puff.  I also have a very tickly cough throughout most of the day and my throat often feels blocked.

Whilst I try to maintain my energy levels by 'Pacing' myself, I also take 3 'Relaxation' sessions each day.  I have been medically retired from my employment due to being close to retirement age, so can now afford to do things at my own pace, which is very frustrating.  I was very interested in Dr Chris's mention of the Energy sugar.  I believe that this is 'Corvalen', is this correct?  And is this a sugar supplement?  I have not heard of this before, and would like to try some as it may assist in an increase in energy levels.

Hopefully, the program will draw more attention to Fybromyalgia and M.E./CFS.  Perhaps we should petition the Health Minister!!

Best regards to you all...and remember to take things easy.

Deeky  

  

Hi Elaine, I'm really sorry about your son. I didn't watch the programme sadly, but perhaps a good idea would be for your son to avoid sugar altogether and only have something like Splenda which is an excellent sugar substitute. I have CFS/Fibro and found that following a hypoglaecemic diet (which often accompanies CFS/Fibro) helped enormously with eliminating headaches, IBS and reducing muscle pain. Energy increased a little too. I'd highly recommend that you both read "What your doctor may not tell you about Fibromyalgia" by Dr Paul St Amand, as it will turn your son's life around as it has for me! Good luck!

While there is no cure at present for FM there are treatments and ways of managing it so that your quality of life improves. Unfortunately there is not a one treatment fits all approach as people react differently. However you will find lots of information about how to manage your condition, and your doctor,  the home of the National Fibromyalgia charity that is trying to improve awareness of this condition.

Hi everyone

Have noticed that FM charity website is not being registered .If you go back through the last few months messages you will find website mentioned a number of times .

M 

Hi Everyone!

without rambling on too much i just wanted to say i can relate to all of you! I was diagnosed with FMS about 4 yrs ago. It was difficult to pinpoint exactly as i was diagnosed with an underactive thyroid just before! I has surgery to remove a joint in my hand and it all started then really. I, like many of you have been up and down if its not one thing its another and it is very easy to feel sorry for yourself every single day-which i admit i have done!! just to sleep one night and feel refreshed and not be in pain-just once in a while would be nice! Like most of you family, friends and collegues struggle to understand and can be very hurtful with the things they say-if they could only understand-sometimes thats all id like!!  I devolped a virus about 6 weeks ago and have had a big relapse and now i have also been diagnosed with CFS! aint life grand!! lol! yes we can let it beat us and let the world pretend its not happening to us or we can shout from the rooftops and stick together! i for one am not going to let it beat me-yes some days are pretty rubbish-but then it makes the good ones even better! sometimes just having someone to talk to makes all the difference.

There are alot of treatments about some of which i am not convinced do anything BUT one thing i do believe is that a healthy balanced diet is paramount!! although very hard when you are exhausted and depressed and just want-NEED-chocolate!! how many of you just agreed out loud!! but i think alot of how we deal with this is self help. relaxation, breathing and avoiding stress as much as possible is all beneficial. take time out for ourselves just a few minutes every day-WE ARE WORTH THE EFFORT-aren't we?

take care all of you and look after YOU!

thinking of all of you and hope tomorrow is a better day

keep positive

big gentle hugs Little phish 

P.S. DO WE KNOW WHERE TO GET "CORVALEN" FROM YET-WANT TO TRY IT!!