Advice please

[Giz79]

Hi, I was diagnosed in 2002 after having my daughter and than left to it. I was ill a lot but it just became the norm and somehow just got in with it. I was never given advice on how to deal with ME. I had my son in 2015 and had no idea working out was bad for you, I was doing up to 8 work outs a week, I would get ll a lot and take a couple of weeks off working out at times but I pushed through it never having any idea how detrimental this was for me, I evon asked my doctor if this was making me worse as I genuinely didn’t understand what was happening, my doctor told me this would have no bearing on my ME, evon though by this point I was IGA deficient, Had Graves’ disease and my IBS/SIBO had caused me to loose so much weight and become very weak. Obviously I now know differently and my working out is probably a massive factor and now it has just spiralled from there. I’m bed bound for days/ weeks at a time, I was made redundant and have no social life anymore , I have tried everything and have spent thousands on treatments that don’t really work. I’m using a functional doctor which has managed to help to a point. I’m considering trying the optimum health clinic. Has anyone used them please? Sorry for the long post 😩

[Hidden]

Hi Giz79. I was very VERY lucky to meet with a Dr William Weir who was instrumental in greatly improving my health I went from spending most of my day asleep to being able to do some jobs round the house and get by with a nap or to if stuck.

The advice given:

Vit D - very sustainable to deficiency in this area so take a supplement. I live in Ireland so I tend to take one most of the year and am on 2000ui's at the moment but will soon be doubling it for winter .

B Vitamins - energy and physical well being.

Omega Three Oils. I get this through Evening Primrose Oil and this helps with the inflammatory response of the body

Meditation and Mindfulness - this combats the stress and anxiety AND allows more control over our situation. Meditation is a good relaxer and enlightener

I also do some stretching from yoga vid(along with gentle iron) and make sure to pace myself when doing anything physical and pace myself more when doing mental tasks - I have to take a lot of care round ability to drive, especially at night.

Hope this is of some help.

Not heard of the clinic - what do they say they can do?

[Giz79 in reply to Hidden]

Hi, thank you for your reply. Yes I do all of what you have noted other than the yoga. I tried a Pilates class the other week but then got very ill again, I’m not sure if that was related but it’s put me off trying any exercise for a while.

I will check Dr William Weir out on line, does he take on patients or were you referred to him ?

It’s easier to post the link on here rather than trying to explain.

Thank you for responding

theoptimumhealthclinic.com/

[Hidden in reply to Giz79]

I was advised of Dr Weir by an Occupational Health Dr who had another patient with ME who gained benefit from seeing him. So armed with that knowledge I googled his details and called him up to arrange an appointment. I live in the north of Ireland and he flew to Belfast where I met him at a hotel for assessment and care planning.

There was also a trial with an antiretroviral that had to be abandoned due to side-effects.

It can be very difficult to get the balance with activity and rest - after 5 years I still struggle to maintain the balance, its a very narrow path!

[Joanne1972]

I'm so sorry you are going through this and being a mum as well, I haven't tried the clinic you mentioned, I just wanted to say you are not alone and lots of us here understand your frustration.

I've also spent all my savings trying things to get better. I try not to get into prolonged stressful events as I find they make me worse and I never recover. I've had 2 stressful events n they take a bit more of me each time they happen. I'm now mostly home and if I go go out I only manage 3 shops n then have to go home.

One thing I do like is my vibration plate...I just got a cheap one n all I do is stand on it for 10 minutes a day whilst it wobbles. You are meant to do exercises on it but I never have energy for that but I do find its good just to get lymph, digestion waste moving a bit after being stagnant in bed or on the sofa.

I also find if I take 4 ginkobiloba tablets before I go out it seams to give my legs a little bit more energy....or they feel less weak and unstable.

I've not had the funds to do any of the programmes like the I you mentioned or the Gupta one so can't say if they any good

I've joined the curable app for pain relief that way you can log on n choose what to do and at what speed you do it, only just started it tho. Can't say if it any good tho as I've just put my back out n in lots of acute pain so haven't logged on for 3 weeks n I've only done a few of the lessons..it's more brain training or looking at pain differently n a few people in reviews say it's good for their fatigue as you can do the exercises for fatigue or pain. You get to choose what type of lesson you want, think it's education, meditation, writing....and done thing else I forget so if you just in the mood for education you can just lay back n listen for 10 minutes.

I used to go to Pilates but had to stop when I got another condition...movement made me go a bit dizzy n wax t just my movement it was anything moving, now I just try n do any movement as an exercise so if I have to pick something up of the floor I'll do a roll down exercise to pick it up, that way I not doing a class I just mix an exercise with daily chores.

Sorry gone on a bit there....was only going to say hello and your not alone

Wishing you all the best in whatever you try

Jo

[klr31]

Ensure your thyroid levels are optimal and don't rely on your doctor to tell you they are 'normal'; check D, B12, ferritin and folate. I have M.E and couldn't exercise at all.

[ALKT]

check out the science for m e website . a lot of helpful knowledge may persuade you that exercise in the form of pushing past your new lower energy limits is very bad for you long term . the actual science that has been done by workwell foundation proves this .

[Fificakes2]

Yes I have and they were really good. It helped me recover, it's expensive but it was worth it because you regain so much of your life.