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Fibromyalgia Action UK

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first timer

cazrules2246 profile image
11 Replies

hey everybody its my first time on this site so im a little nervous i have had fibro since I was about 16/17 and I am 21 now so if anyone who has fibro for a while let me know if you have any pearls of wisdom.

Thanks all xx

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cazrules2246 profile image
cazrules2246
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11 Replies

hi no pearls of wisdom to offer however you will find amazing information support and care on this sight so welcome xx

if you have any questions if you write them under questions not blogs,, not thats its the end of the world either way.

its good to have you on board xx

gentle dyslexic hugs

SimonMiddlemiss profile image
SimonMiddlemiss

Welcome to the forum.

If you've got specific questions about your condition feel free to post them here and we'll see what we can do. If you don't feel comfortable posting things publically quite yet, then ping one of the volunteers, admins or FibroAction representatives and we'll do our best to help out.

Cheers

Si

fairycazzie profile image
fairycazzie

Hi pearls and welcome!!! Xxxxx

Hello and welcome Cazrules, we may not have any pearls of wisdom, but we have all our personal experiences to share, lots of info, support and friendship too! Make yourself comfy and enjoy your time with us, take care! :)

Tattoo6 profile image
Tattoo6

Hello there,

Welcome first and foremost !

You will get all the help you will need about answering questions and also just having a discussion with others who know how you feel, and know the illness in which you have!

We all can give advice on personal experiences but also give a helping ear when you wish to vent out too ....

I hope you find what you are looking for on here....

Steph x

Dixiesdaughter profile image
Dixiesdaughter

Hi caz ack my god wee chicken your so young and it pains me to think of you having to contend with this illness when you should be out wrecking havok on the world (at 21 its allowed lol) like every one else on here I dont have pearls of wisdom to offer just a shoulder to cry on and a ear to listen if and when ya need it. Welcome to this little site and im sure like me you will gain knowledge and experience, support and answers to some of your questions by reading the blogs or the Q & A section. You can also contact directly any of the admin who I have found to be helpful, informative and very supportive. Good luck to you on your fibro journey like all of us you will have good and bad days sore or exhausted days and days where you just want to give up! Just remember your not alone now as you've just gained a new additional virtual family to help you deal with this horrible and much misunderstood condition. God bless ya wee pet and hugs from belfast x Dixie

phlebo123 profile image
phlebo123

Welcome -- so glad that you had the courage to write a blog :) I am sure that you will find this site useful because if you have any questions, then there is usually one of us who can give you some advice or sympathy as we are all experiencing the same or similar symptoms to yourself. You may find that you experience a whole variety of symptoms ( fatigue, brain-fog, aches pains, IBS, insomnia, intolerance to noise, smells and light -- to name but a few!) It is very difficult for your family and friends to understand what you are going through but I hope that they are supportive of you. I was diagnosed by a rheumatologist (a very rude one may I add!) 6 years ago, but had experienced symptoms for several years before that (may I ask have you had a diagnosis by a rheumatologist?) Do you have a GP who understands FM? I initially tried amytriptalline which did help for a while -- but then I decided that I was going to be "strong" and have learned to control my symptoms by "pacing" myself and finding "a happy balance" everyday (this is a lot easier said than done - but you have to be very strong with yourself and know your limitations and learn to say "no" when people around you are expecting too much of you!) I now manage to work part-time, and enjoy walking, yoga, swimming, gardening and baking. Like most of us you probably find that "stress" and "stressful situations" make the symptoms worse, so I have learned how to handle these in a way that is least stressful. I believe that the stress of "modern-day living" has a large part to play in FM. May I add that you are in very good company because apparently Cleopatra (had) and the actor Morgan Freeman has FM. Above all stay positive and when you need any info or advice or support just ask a question on this site and we will do our best to help you. Take care xx

Hi caz. I had symptoms of this illness from early teens although i wasn't diagnosed till my 30's...and then not fibro till my late 40's. You're lucky to have the diagnosis so young. (but not the illness obviously.... it sucks)

I think what I've learned that is most helpful is that this could very well be a build up of toxins over many years. I have been given some really good advice around food. I avoid caffiene, artifical sweetners, dairy, potato, tomato, mushrooms, yeast and wheat.... which sounds daunting until you realise that all it means is replacing foods with safe ones. Theres lots fruit teas and decaf drinks out there. dark chocoate is ok in small amounts. Sugar is better than sweetners and honey is better than sugar. Sugar makes any reaction worse. Theres lots of milk alternatives around. Swedish glace ice cream is yum and lactose free cheese is ok. I have sweet potato instead of potato. Sweet potato fries are good. Rice seems to be fine and egg noodles.

You may be different around foods so its good to keep a food diary and watch out for flair ups.

Exercise is a dirty word but I find that the wii fit is really good. They do yoga breathing exercise and balance games. All not too tiring and keeps you going. Swimming and walking are also good, but if you feel you can do 10 lengths only do 2 and then enjoy floating lol

Magnesium helps me with pain. I don't really do medications.Paracetamol sometimes.

The most important thing is to remember it;s ok to go out and have some fun. Pacing and payback is a big consideration, but every now and then its also important to let your hair down.

Life doesn't stop because of fibro. We just have to be more imaginative and enjoy the little things. x Listen to your body and hopefully you'll manage to get some good sleep which helps.

Theres loads of info on here, and the fibromyalgia uk site also lists local support groups.

lynnh profile image
lynnh

Welcome to our little family, as you can see already there is a wealth of info, advice and support waiting for you xx

mystique profile image
mystique

Welcome hun, I also have the dreaded Mr Fibro n my daughter has been recently diagnosed ahe is only 16 yrs old she also has dermatomyositis (Currently in remission) It can be really hard some days but somehow you get through it - this site is fantastic and has helped me a lot everyone is so friendly n there is usually someone who can offer you support n advice I am so greatful toeveryone on this site - im sure you will feel the same way - if u ever want to talk or have a good old rant n rage this is the place to be lol sending lotsa gentle fluffy hugs your way - luv Mystique xxxx

cazrules2246 profile image
cazrules2246

I cant believe how many caring and welcoming comments there are and the tips have been really useful, im trying my best o exercise but really lacking motivation and energy for it. to answer some questions for phlebo 123 I did go to a rheumatologist and he then referred me o a fibro specialists he was really nice luckily, my gp however is not so I still get the feeling he believes its all in my head. Im lucky my mom also has fibro among other conditions so she understands and my partner has been there when the spasms have been so crippling I couldnt take it. I am on amitiptylyne at the moment but would really like to not be on any tablets eventually I want children and would have to be weaned off of them anyway so I think sooner would be better than later. I am going to try to do some exercise and thanks for the food tips stepper I am already lactose intolerant but seeing what other foods trigger me is a great idea. hoping sleep for everyone xx

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