Saying hi and asking for help! - Fibromyalgia Acti...

Fibromyalgia Action UK

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Saying hi and asking for help!

twinx57 profile image
12 Replies

Hi all,

I've been following the posts on here for a while now and am finding them very helpful.It is so nice to hear from people I can identify with,who really know what its like to live with fibromyalgia and related conditions.I was diagnosed 3.5 years ago,although I suspect I've had it for at least 25 years.I have not been able to work for much of that time firstly due to bipolar 2,and now with the added difficulties that fibro brings.I am feeling so frustrated at the moment.This summer I have developed severe sensitivity to the sun,causing me major fatigue,so have had to stay indoors during the lovely weather.Also,my body feels completely out of sorts.I have had a period after 2 years of nothing(had gynae checks and all is well),I have been overwhelmed by fatigue,often fighting to stay awake,or simply having to lie down there and then whenever possible and sleep,and after years of managing to maintain a reasonable weight,have gained 10 pounds over the last 3 weeks,even though my diet hasn't changed.I have also started to have daily headaches,and my legs and arms have become much weaker in spite of all my efforts to maintain some muscle strength.Have been several times to my GP who has run lots of blood tests for thyroid deficiency,lupus etc but all bloods etc are fine.Has anyone else experienced similar problems? It would be very helpful to hear from anyone who has. Many thanks

12 Replies
EquineArcher77 profile image

Yes to all of the above! I display *all* of the things you have listed there. Trying to maintain a healthy weight is a friggin' nightmare, and after managing to lose 5 stone in one year I find myself eating like a flea to try and keep it off! :D

It is very frustrating yes, but you may find that this is all "normal" for you.

A strict diet (no caffeine, fizzy drinks and sugar) and as much exercise as I can tolerate help keep me ticking over.

Hope you feel better soon x

lou60 profile image
lou60 in reply to EquineArcher77

I would like to find out more about weight loss I've stopped inhaling Haribo [ with some difficulty] seriously how can we lose weight when we can only move at snails pace all the usual eat less, achievable, and move more advice is a tough one to follow. xx

EquineArcher77 profile image
EquineArcher77 in reply to lou60

For me, it really was a case of sucking it up, seriously changing my eating habits and taking a long, hard look at portion sizes. I am lucky in that I can exercise pretty well despite the pain, as long as I factor the fatigue in later in the day. I don't eat any fast food, fizzy drink, sugar, sweets etc, drink copious amounts of water (I have interstitial cystitis issues) and eat tiny portions, little and often.

Of course, for those that stick to an exercise routine for whatever reason, I would recommend being realistic and honest with themselves about what they are eating and the amount, and see if that helps on it's own. Of course, certain medications can cause weight gain, so that's an added issue for some. xx

pip_r profile image
pip_r in reply to lou60

I've lost just over 5 stone and it's taken 14 months. I used the weight watchers app (you can also do it on the internet) as I knew I wouldn't be up to (or want to) go to meetings. As with EquineArcher it was a case of knowing I had to change my eating habits for life, but I was very surprised at how small my portion sizes had to become. However, sticking to the weight watcher points (and you find out it is just as important to eat enough as it is to not eat too much) meant the weight came off. I'm really proud as, like most of us, I had to do it without any exercise.

All I can say is it was definitely worth it. I have maybe 7 to 14 pounds still to lose, but I know I can do it. The thing that helped me stick to it was the fact that I wanted to be able to live the best life I can with fibro. I felt like I'd lost all control of my life (can't work, can't do household chores, can't go out and enjoy myself, etc) and I decided that the one thing I could take control of was what I put in my mouth. The weight watchers app provided me with an easy way to record my food, which I was able to do even when feeling really tired. I knew it was important to have something to help that wouldn't require too much energy or brain power. While the weight loss has not fixed my fibro (and I knew it wouldn't), I do have less pain in my hips and knees, I don't wheeze any more and I like shopping for clothes again ;)

Not sure if this helps any, but it's another example of someone losing weight if nothing else.

lou60 profile image
lou60 in reply to pip_r

Clearly what I must do I've spent about a year just wallowing [diagnosed 14 years] just wallowing thinking is this it then I found this forum and learned to take each day as it comes.XX

pip_r profile image
pip_r in reply to lou60

I wallowed myself for a while ;) I probably started the weight loss plan 2 1/2 years after diagnosis. Try not to give yourself a hard time - it's a difficult condition to come to terms with. With weight loss, I think you have to be 'in the right place' to do it if you know what I mean. I'd been really overweight for about 16 years having been super fit before. Something just clicked for me in May last year. I still love chocolate though ;) xx

lou60 profile image
lou60 in reply to pip_r

It is chocolate digestives with me and haribo xx

pip_r profile image
pip_r in reply to lou60

Mmmmmmm, haribo ;) xx

rosetta54 profile image

twinx57 I have experienced similar problems I have had fibro for 18yrs and I developed a allergy to the sun and heat I would break out in a rash on my lower legs and the fatigue worsened and I had leg and arm weakness also I developed a rapid weight gain from gaining 2 to 3 lbs a month to 5 and10 lbs a month. My endocrinologist only found that my thyroid was slightly low but it did require medication after going from 150 to 233lbs in 3yrs with the rapid weight gain spiraling out of control I opt to have a gastric bypass Apr. 2014. I have loss 33 lbs I feel better but I am unable to eat regular food due to severe nausea and constipation so I am still on the 1st. step post-op diet. I am being treated for nausea and constipation.

The rash has gotten much worst this summer so I saw my Dematologist and she did a byopsis, and gave me some cream. the results from the biopsy will be in next week.

Hope this helps xxxx

lou60 profile image

Definitely know I clearly eat too much nonsense[ low mood] now better placed to tackle the issue, maybe make my way to weight watchers. XX

TheAuthor profile image

Hi twinx57

I am so sorry to read that you are suffering and struggling so much at this time, and I genuinely hope that you can find the answers that you so desperately desire and deserve. I can relate to quite a few of the things that you have mentioned.

However, I always say that I think that we are all unique individuals and therefore we all react and respond differently to both our illnesses and our medications. Judging by the amount of members who suffer the same symptoms as you and those that have differing issues, it sounds about right?

I want to wish you all the best of luck.

All my hopes and dreams for you

Ken x

mitziblue profile image

Hi Sweetheart, I'm going through the very same thing right now. I'm waiting on my blood test results and can't figure out why I'm gaining weight??? I have even been dieting and still have put on 20 pounds. I hope maybe between us with our doctors help can find the answers. Keep in touch... Hang in there honey. xxx Mitzi

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