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[Dorothy Gale]

How are we supposed to live with this amount of pain in every joint and muscle? How are we supposed to sleep? I see so many of you struggle with this ....

I have M.E (mostly bedbound now due to covid in Feb) and perimenopause and the joint pain has ramped up so bad in the last 3 weeks..never ever in my life felt so sore and I walk around like I'm 100 years old. Just even using my arms to do something I'm in pain in my shoulder...etc etc etc


I used to feel great and was very mobile despite M.E (apart from when I was in a dip)...never had any issues like this....then BAM!

I can't exercise or do the yoga, walking, keeping active things healthy perimenopause ladies can....so....

How do I function now? I'm so scared.

Unfortunately I'm intolerant to meds/supplements etc. They cause huge GI issues.

So worried for my future. Have visions of this being it now. Housebound and no mobility. In constant pain and no sleep.

Why are we not informed as women that this is our future fate at a certain age?....instead, we are just utterly sideswiped and left to think we are going mad?

I literally do not understand. 

Can anyone offer hope that these pains can improve?...

[Ermin2trude]

I think I replied to your before as someone who has ME, had Covid and struggles with HRT.

I know you can’t take medication and supplements, but have you tried getting what you need through food? I highly highly recommend a book called The Detox Kitchen Bible by Lily Simpson and Rob Hodson. You can look up any particular health issue (including menopause, ME/CFS etc), and it will tell you what foods you need to consume and then point you to relevant recipes (all free from wheat, dairy and refined sugar). As an example, under the ME/CFS page it tells you that you must avoid foods containing aspartame and the flavour enhancer mono sodium glutamate because they both make ME worse. It does also have a very long list of foods that will help and explanations why. It’s my bible. Plus the recipes are delicious and easy to cook.

I also recommend acupuncture. I had a 6 week course after being bed bound for over 6 months and was so much better after just 3 sessions.

I’m sorry you are feeling so awful, but there are ways/options out there, which may not be an instant cure, but will make you better.

 Best wishes.

[CLKD]

If you have similar threads then keep to one otherwise responses will become lost.

Who is over seeing the ME?  What is GI? 

If you are unable to tolerate meds by mouth then do try some of the rub-in gels.  The warmth and rubbing action can relieve a lot of muscle tension.  Also perhaps get an appt to see a physiotherapist interested in womens health, many do home visits to give advice.  Do U bath or shower? 

[Dorothy Gale]

Thanks for your replies 🙂

Did you get a mobile acupuncturist being bedbound? I'll definitely look into it. We live out in the middle of nowhere so unsure if that's possible but you never know! Difficult accessing home visits etc from people apart from a wonderful nurse who takes my bloods.

I self manage my M.E as nothing doctors can do except manage symptoms. I've had M.E 30 years so I'm well experienced at dealing with it. There's no cure. Just management.

GI. Gastrointestinal issues.

My partner showers me now my capabilities are much less since I got covid and deteriorated. No bath where we live unfortunately 😕 the one thing I miss since we moved to this new home in thr countryside.

I do use the gels. Havent found hugely helpful to be honest. 

X

[CLKD]

Tnx for the update.  I'm cynical as to whether the gels work, however - would companies continue to sell them after all these years?

I think that constant pain needs a lot more of the gel, regardless of what is recommended on the product.  It might be worth asking the Company by e-mail .  Is there a support group for ME?

A swimming pool would ease joints but is a phaff getting there, preparing for the water etc. and I HATE those changing rooms.  Sweaty.  No room.  Clothing gets wet etc. 

[Ermin2trude]

I did find a mobile acupuncturist, but within 3 weeks I was very much mobile again and went to their clinic instead. I’ve never looked back.

At the ME clinic I went to, we were all told our liver was struggling and needed huge support through diet. The best piece of advice I can give is to flood your body with omega 3 fatty acids to decrease inflammation via oily fish, linseed/flaxseed, seeds, walnuts, plenty of dark green leafy vegetables and limit your intake of omega 6 which increases inflammation (found in vegetable oils such as sunflower and corn). Switching to extra virgin olive oil or rapeseed will help reduce omega 6 in your diet. Adding a level teaspoon of turmeric daily might also help…..mix it into soups, stews, scrambled egg etc.

I was extremely fortunate in going to such a great ME clinic and their nutritional advice has never let me down. It has helped me with long Covid too.

[Dorothy Gale]

Thank you all so much for taking the time to reply x

[CLKD]

How do you cope with linseed/flax?  I bought some years ago and it wouldn't cut  .  I gave up