Suggestions for M.E.

[SueRytt]

Hi! I have fibromyalgia and M.E. and was wondering if anyone has any suggestions on living with m.e.

[Dizzytwo]

Hi Sue, nice to meet you and welcome to our group I do suffer more with Fibro but I do also crash at times with the exhausting tiredness of ME.

The biggest thing I had to learn after dealing with these horibble illness for over 30 year, was to stop trying to be the perfect home maker and superwoman lol

I learned to step back and let others help out where possible with things like the cooking, cleaning, shopping, laundry, bill paying, etc. Reassigning and simplifying what needed to be done on a day to day basis was a big help to me. Thankfully I do have a very understanding hubby. Not such a good cook though LOL but it's a small price to pay xx

Momo

[SueRytt in reply to Dizzytwo]

Thank you Momo. Our stories sound similar, but the older I get the fatigue gets worse and is constant now. I’m taking my vitamins, etc. Just so tired. And bored of this, even tho it’s been about 40 years.

Have you found anything that helps to bring you back to some increased level of energy?

[Dizzytwo in reply to SueRytt]

Hi Sue, may I ask what medication you take and when you last had a chat with your GP? No one here is qualified to give medical advice I'm sorry to say.

We are of similar age I will be 64 next month. And I too have found as I get older I definitely hurt more.

All I can say when something changes in how I feel. Maybe more pain, new pain, tiredness that I've not felt before. I always make an appointment to speak to my doctor.

When ever something changes or feels worse. If in doubt check it out is my mantra.

Please don't put everything you feel down to Fibro /ME have a word with your GP when you can xx

[SueRytt in reply to Dizzytwo]

Sure, I should do that. I control some of the symptoms (like pain and restless legs) with just diet. I take meds for high blood pressure plus an anti anxiety pill to help me sleep. A sleeping pill because the anti anxiety doesn’t help me sleep but it sure has mellowed me out! 😂. I just get tired of the doctor route. I was hoping someone might have something like foods they eat that would help.

Thank you Momo!

[Ribbony in reply to SueRytt]

I so sympathise. As I've suffered from CFS for 47 years after Glandular fever and ME when I was 21. No doctor has ever been able to help me. I operate at 50% normal energy, having to crash in bed every afternoon. They simply don't have the blood tests to check your mitochondrial function. I assume we can recommend books? The most helpful one I've found is by Dr Sarah Myhill who left General Practise in the UK to help CFS sufferers. Sadly she isn't taking any new patients. But you can get a lot of tips on which supplements might help and why. B complex with extra B5 is my most effective one. I also have Afib and it helps with that too, plus lots of different magnesiums. Oh, and low sugar in my diet! (can't quite cut it out!) Hope that helps!

[SueRytt in reply to Ribbony]

Thank you! I’ll check out the book!!

[birkie]

Hi sueRytt

I've suffered with ME/fibro since 2005..gp and consultants have done nothing but throw pills at me quite a lot which none have really worked. I got talking to my best friends sister in law who has issues with fatigue tiredness her gp administers her an injection I think she said every month think she said B12 but I could be wrong🤔 I'm in the process of asking my gp about them.. The sister in law said she feels much better and has returned to work..

Karen

[SueRytt in reply to birkie]

Thank you! I’m taking B Complex plus B12. I’ll talk to my doctor about shots.

[JayVeeJayVee in reply to SueRytt]

I have had ME for over 25 years. I used to manage to function at work all week and completely collapse at weekends. Now I am semi retired so if I feel fatigued I will have a few quiet days. I find it helps to keep a bit active and to gradually try to do more within your own ability. I got set back for 2 years by cancer in 2012, but now I only rarely feel fatigued. I think good diet, and as much exercise as you feel able to take plus a positive attitude helps. Also I take a low dose of an antidepressant which helps increase the levels of serotonin. Occasionally I might feel I can't take a walk and I start out and overcome it, going at my own pace. Any way I know it's worse for those with fybromyalgia. Good luck and keep positive