ME

[rosehip]

Does anyone with ME ffind it scary not being able to brush your hair some days or brush there teeth. i find no strenth some days . The fibro pain is bad but the me is scaring me

[ladymoth]

I couldn't comment on M.E. as I don't have it, but loss of function is very frightening.

I have RA and fibro, and I have had odd days when I can do hardly anything. I would hate to lose my independence, so I know where you're coming from!

It sounds to me as though you might benefit from some CBT (Cognitive Behavioural Therapy) I found this very beneficial, as it helped me to cope with pain, but more importantly, to overcome the fear and depression that chronic pain can cause. For me it has been a godsend.

If you want to try it, your GP will probably be glad to refer you for some therapy - there's nothing to lose.

Best of luck, and hope you soon improve

Moffy x

[stressedok]

Yes I've never officially been diagnosed with M.E. Just fibro and a list of associated thongs. Im so exhursted some days I want to wash my hair but can't because I know I won't be able to dry it with the hairdrier. I drive kids to school,have to sleep in car for an hour or two then drive home again. My body feels like I've run a marathon, heavy lead filled limbs. Its awful. It really gets me down.

[ladymoth]

That must be dificult for you - but unfortunately your symptoms are very much consistent with fibro/ME/CFS - no-one seems to know where one ends and another begins, but to all intents and purposes they are the same.

Maybe you should ask your doctor to do some investigations to exclude other problems, especially Rheumatoid disease or Myasthenia Gravis, and hopefully to refer you to a specialist, because it is important not to blame 'just fibro' and miss another serious condition which might respond rapidly to treatment. You should have a full blood screen at the very least.

I do hope you find some answers soon, but please don't struggle on without asking for help!

Moffy x

[rosehip]

i have had all the tests , I have had it 19 months now.

[ladymoth]

That's something at least! Have you seen a consultant, yet? Treatment of fibro is mostly by managing the pain and pacing to help overcome the exhaustion.

Make sure you're getting adequate pain relief, and keep going back to your doctor until you find something that suits you - it's usually a case of trial and error.

i would still recommend giving CBT a try if you can get referred - it can really make a big difference.

Moffy x

[rosehip]

ok ty

[babebatista]

Hi Rosehip,

I have M.E, Fibro and a nerve condition so i struggle most days. I understand and truly know what you mean. My strength is sapped from me almost every day and I'm ever so glad that my husband is my carer and is able to help me whenever I need him. I struggled that much to brush my hair that much that I had it all cut off. Its easier to manage now its shorter but I still have trouble combing it. My teeth have suffered also as a result as not being able to brush them. My husband has to wash me and give me showers and what not. Its not easy but i'm getting there slowly. If you want to talk further then I am here for you. Gentle hugs to you. Much love xxxx

[Cat53]

My grandson has ME and has been to seen a Kiniesiologist. He went at the begining of February. She discovered a load of foods he was intolerant to and suggested he stopped eating them, plus the use of supplements. Feb he was tired after having a shower. He stuck to her advice and had his final session with her this week. He is allowed to eat most food now, but sugar is a big no, no! He has applied and been accepted to go to college to do his A levels. He has driving lessons and meets up with friends. He is did a day at work. All this after being so ill for almost too years. We are delighted! My advice is to try it for yourself.

[shazzad]

Hi Rosehip,

Have u thought about finding a local ME group in ur area, there u will be able to chat with like minded people, collect useful information and be supported by others. I too have days like urself, however my doctor has diagnosed me currently with malaise, from the little knowledge i have on this condition is that whenever i try to do normal every day tbings if i push myself it gives me that general feeli g of being unwell. I now feel that i have ME to mainly due to the chronic daily fatigue, my muscles stop working and weigh my arms down when i try to dry my hair, have to keep stopping! Its so frustrating. Good luck to u.

Shazzad xxx

[Hidden]

Hi Rosehip

I don't have ME but I have been diagnosed with chronic fatigue syndrome and can relate to the loss of independence and frustration. I am very weak down left arm and leg pretty much all the time and get fed up asking for help and sometimes I can't manage to shout for hubby I have to ring his mobile or message him even when he's in the next room. I also find it scary as even with hydrotherapy its not improving. I've gone from walking to shop and the town by myself to having to be pushed in a wheelchair within the last 12 months and not understanding why has been driving me crazy.

I agree with Moffy about CBT coz it also worked wonders to help me manage my pain.

I think its normal to be scared when things start changing especially when its hard to establish if its the fibro or the fatigue. I talk to a counsellor regularly and have done for 5 yrs now its been a godsend to me and my hubby.

big hugs

zeb xxx

[oldieB]

Yes it is very scary! I have M>E> and Fibro both long term though undiagnosed for 35 years! Just "go with how you feel" and only do what has to be done and save some energy for a little "treat" for yourself -sit in the sunlight or if you can listen to some music, don't know if you are able to concentrate reading - I can now it's warm but in the winter I find it very hard. I have a loving husband who does a lot for me so I do appreciate how fortunate I am. Keep positive/

[Signlady]

Hi rosehip thanks for sharing.

I'm on my 3rd day of a massive relapse which I never thought would happen again, have on average 6 relapses a year but this is the worst since my first attack 28 yrs ago. I want to encourage though, not discourage!

It's totally my fault, thought I was 'over it' and overdid it, I run my own online business which I adapt to fit in with my rubbish health! I have crushed spine, diabetes, asthma & diagnosed ME since shingles 29 yrs ago.

I WILL NOT give in to it ( even though it does you good to rest & cry on first relapsing!).

I too haven't the energy to comb hair today, flopped under duvet & frustrated at having to relinquish customer orders that I can't now fulfil for Christmas

Keep positive xxxx

[paula1967]

Yes i find this all the time as i suffer from ME quite bad, the way i loose energy is scary like u say but i go to bed n rest, its the only thing you can do. Take care n gentle hugs xx