Fibromyalgia Action UK

Fatigue & supplements/vitamins?

Hi all,

I've had Fibro for a number of years (although only officially diagnosed earlier this year), since childhood I reckon.

For many years the main symptoms were pain-related, but more recently, the biggest problem is the cognitive side of the condition. It's ruining my life at the moment...I'm 23 and had to stop work as I am exhausted after mentally draining activities/socialising.

Just wondering if anyone has any tips for coping or managing the fatigue? I've heard all about the pacing, and I'm currently following a self-management/activity plan from a self-help book. I don't have much caffeine, limit my sugar intake, try to exercise when I can (but that's becoming more difficult).

I'm really interested to hear if anyone has tried supplements such as CoEnzyme Q10, NADH, Creatine, D-Ribose etc.

I take a B vit supplement and was taking an iron supplement but my IBS has flared up so that's on hold.

Thanks all,

Emma

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Hi Emma,

I'm in the same boat Hun......grrrrrr!

My life revolves around pacing, but to be honest it doesn't always help. Problems flare at any given time without any reason I can think off.

Sorry I can't recommend supplements. I am very conscious of what I eat and drink.

Exercise..... such a vicious circle. Body circulation is so important but I suffer for days after little exertion.

(Diagnosed with CFS/ME, FM, Atrophy Thyroid & Pituitary Adenoma. )

Cognitively I have fluctuating times of slurry/difficult speech, can't find works & talk rubbish cos of that. Can't concentrate, have to go things for them to sink in etc.. Is that similar to you?

Xx

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Hi Jelly, thanks for getting back to me and so sorry for not replying until now. It's really interesting to hear about your story as I can see lots of similarities. I haven't heard of Atrophy Thyroid and Pituitary Adenoma so will have to look it up.

I completely relate with the concentration and speech difficulties. Do you find that all symptoms seem to come at the same time? EG. feeling cold, IBS, poor memory/speech, tired even with sleep etc.

I don't know whether to try cutting down on wheat but I don't even have that much of it at the moment.

Do you work at the moment? The most frustrating thing is that I am usually ok for the first 2-3 hours but then am exhausted after that, making 9-5 jobs impossible at the moment. Fortunately I am living with my parents at the moment (I'm 23) but I desperately want to get on with my life.

Take care x

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Ps. How did you go about getting a diagnosis for the pituitary adenoma? I have low T4 and the low end of normal TSH, no periods, PCOS and doctor is asking for second opinion on the abnormal thyroid levels.

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Hi,

I did some reading & pituitary problems was something that kept coming up against some of my symptoms. I discussed with gp who arranged new MRI. It showed on that. We checked back on previous MRI's and it didn't show a year before.

Since then had sheer disinterest from Endo until I recently threw a strop, demanding more bloods as not done full load of tests.

I've been poorly for about three years. Get passed around consultants, especially with CFS/ME /FM diagnosis but the CFS/ME specialist won't try and help as said I have symptoms over & above (I agree). So going around in circles.

Most recently my TSH was 2.6, T4 13. Does this mean anything or compare with you? Now having bloods redone.

X

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Hi there,

Thanks so much for getting back to me. It's really interesting to hear from your experiences.

I'm sorry things are difficult at the moment and I hope the consultants can give you some clarity on the issue.

My bloods are very similar to yours: September TSH 1.54 and T4 11.3; October TSH 2.3 and T4 12.

I also have low FH and LSH levels (I don't have periods) so wondering if that could be linked to the pituitary gland.

I've contacted my GP but it's such a slow process, isn't it?

Which symptoms do you find the most troublesome?

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It's just the pits being like this, I have tried just about every

Thing, although I have found a differience in smaller meals

No artificial sweatners, never have asparatain which is in lots

Of things even things that are not diet like fizzy drinks.

I don't eat bread biscuits makes life a bit hard but any thing

Is better than pain and being so tired, I also don't eat a lot of

Root veg.

Now does it work? well my pain is lots better and I have not

Had IBS for a long time. I don't have as many episodes of

That terrible tirdness.

It has not cured, but it has for me helped, I am a nurse and

Work in a prison, can you imagine my horror last week when

Doing a shift was asked by a prisoner if I was starting a new

Fashion, one black boot and one brown shoe. So it still gets

You. But it is better. its very hard to pace yourself tried that

And found it does not work.

Good luck in what ever you try you might find some thing

That works for you

Viv x

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Hi viv, understand the bread, biscuit, aspartame but why do you not eat root veg. Hope you do not mind me asking but i am doing the same and it is definately helping with ibs, not affecting pain in general though.

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Yes, I have heard that root veg can be an IBS stimulant for many people, though I love them and they are good for me so despite having IBS I eat them anyway :)

Love the boots thing! You could make it your fashion statement. :)

x

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Hi Viv, thanks for your tips and sorry for taking ages to get back to you.

It's interesting what you say about root veg...do you find that potatoes make you tired, too? I avoid them as they make me feel yuck.

With the bread and biscuits, is it the gluten/wheat you avoid or the sugar?

Really useful to read about your story and good luck at work! (Maybe black and brown shoes can be a new uniform trend.)

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It's desperation, really not any other reason, I was just so fed

Up with feeling tired, not being able to sleep, and pain, I want

To work for a few months yet, and there was a good chance

I would be sacked because of being sick

Don't get me wrong I still get pain but not as bad, I'm still tired

And muddled but not as bad, I get flares but they only last for

A day then go.

I had read about asparatain so cut that out to begin with, it's very

Hard as its in such a lot of things most diet foods and some things

That are not diet I was getting lots of headaches but they were not

Normal headaches places round my eyes top of my head if touched

Neck and base of my head. Again this still happens but no where as bad

And not as often.

I then cut out bread as I had read that this has an effect as well, I still

Have the odd bit of toast, then the root veg, but some, some times.

Well that was almost a year ago, I have lost a stone in weight and

Yes I'm so much better.

I don't know if it works or not, may be in my head, but I'm better

Than I was and able to work As I said still have muddled days hence

The shoes, and not remembering if I have taken my tablets, so it's

Not a cure but a help.

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Sorry to hear you've had a difficult time but it sounds like you're on the right track by eliminating certain foods from your diet. I'm trying to cut back on the wheat and I think that helps to some degree. I don't want to cut it out completely as I tried that in the past, but try to have it in moderation and not as the main feature of my meals.

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Hi. The thing that I am finding really hard is pacing myself I am used to always being on the go. I work pretty much full time and hardly take a day off. If I am feeling bad I just take a couple painkillers and sit down for 10 minutes I then start working again but when I get home from work I am like a zombie. Most nights when I get in from work I sit down for a bit and then I have my tea and then I start cleaning the kitchen. The other night I was on my hands and knees scrubbing the kitchen floor and when I had finished I couldn't breath and I had really bad palpitations. I really must listen to my body and learn to slow down.

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Hi Bluejeans,

I can completely relate to what you are saying about wanting to continue with normal life but finding it exhausting. I'm currently working through a book called "Overcoming Chronic Fatigue" by Trudi Chalder and Mary Burgess and have felt it useful because it involves doing activity diaries. Worth a look!

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Hi, Iron supplements can really irritate the stomach lining especially for people with fibro. I would recommend C & D supplements, with oily fish (mackerel, sardines on toast) rather than the B supplements as that is a gentler way of getting what you need. Great about sugar and caffeine intake and exercise, well done! If you get muscle cramps I find Rhus Tox from Amazon shifted them for a time and is the only thing that did for me. x

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Hiya, thanks for your tips. I will have to make a note of Rhus Tox as I haven't heard of that before. I've started taking Vit C again, as well as Omega tablets.

Take care :)

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For me since I have started with all the pains, I don't

Get IBS often I think Tramadol and cymbolta tend to

Stop it, just a quess but I don't have the problem now

Still a bit strange at times I know it's not gone.

I work only part time, but I don't want to leave yet

And two years ago after my last warning for going

Sick. I tried every thing,

I read just about every thing to do with fibro, some

Complete rubbish, my doctor had told me that I had

Tried. All the drugs and there was no more to give me

I had even had morphine.

I found on Google list of things that was good food

For fibro, and bad food, so I just tried

It was reccomendation that for some reason do not

Take root veg, I still eat them on occasions but very few

Asparatain was the worst and you would not believe

The amount of food this is in all the diet food and some

Not diet. Bread was another one to avoid and biscuits

I have to say the above takes in lots of food.

I still have bread but not often, some times toast,

And the odd biscuit.

Do I feel better, Yes I do, I still have pain now bearable

I still get flairs but they tend only to last a day, and mostly

At night for some reason, I still have to go sick but not as

Much. As for being tired and missing part of my brain

Yes that still is the case but not as bad and I take Vit B12

which helps.

You must make up your own mind I think it depends on how

Desperate you want your life back, let's face it, is never going

To get better, I still take drugs, but for me I have some of

My life back and so it's worth it.

Regards Viv x

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