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Fibromyalgia Action UK
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Hi people I have just been told I got Fibromyalgia today it's upset me a bit I am 27 year old I got a 3year old boy and a 10 year old girl I am scared in case they get it I had this problem over 5 years I been every doc and they didn't now I just want bit of info wat I can do and wat I carnt eat and I been told I got it for life is this true and I gotta go see pain doctor do they help and could I go to work or do I have to go on the sick and could I claim pip for it

9 Replies

Hi Terrieanne welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.

It does help with the whole process and I wish I had found the site years ago. I have had Fibro for nearly 30 yrs and I'm still learning about it, like we all are.

I'm sorry you have just been diagnosed with fibromyalgia & taken so long to do so but, I'm afraid this is the same story all the time because there are so many thing to e lliminate before Fibro will be diagnosed. 5 yrs is a long time though and its very frustrating and stressful when you don't know what is the matter with you, our mind being the way they are, you always think the worst. I don't know about you but I was quite relieved I finally knew what was wrong with me.

I look forward to chatting with you on the forum.

Please do go look at the mother site where you will find all the information you need and lots of useful links on Fibro and I look forward to chatting to you on the forum.

Peace, luv n light

Jan ☺

PS. I advise you to lock your post, follow this link to simple You will get more replies on a locked post too.

Hi Terrieanne

Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read that you also have Fibro and I sincerely hope that you can find some resolution and relief to these issues. Like with all medical conditions it affects people to different degrees and therefore we can all do different things to one another. Some members walk like any regular guys but sadly some are in wheelchairs. So it really is difficult to advise you on this.

I personally think the same can be said for food stuffs as well. I have quite a few allergies which other members do not suffer with but I am aware many members have problems with Gluten whereby I do not. Many things with Fibro care sadly a case of trial and error.

I want to sincerely wish you all the best of luck, and please take care of yourself my friend.

All my hopes and dreams for you



If you are not working you would be unable to claim sickness pay

PIP you can try for however it is awarded for how your illness effects you not on what illnesses you have .

Its in two part mobility and care

I would advise you to get help applying for it

Janet benefit adviser on this site would be a excellent place to start

Hi everything you feel after being told you have fibro is normal. Now the time to read ask questions on this site find a support group and start to learn to live with your changed body. This is challenging and takes time and every body is different. Keep a dairy is a good start what you do how its effects you and food . If you feel bad on a day read back one or two days to see if you can see what u did that might have aggravated your body. You will soon see patterns as for food do one food item at a time leave it from diet for a week or two then reintroduce the one item and see what happens. For me I've found sugar marmight white bread rady made product's some pizzas pasta and still working on it , I hope this helps and ask me anything any time you not on your own good luck angela

Bless you i dont have fibro but fully understand your anxiety, im surd the wonderful members here will swing into action and start to answer your health questions, anyone can claim PIP because it is health related and not affected by income or employment. If you are unable to work you can claim JSA and may then be moved into ESA. What you will do that you cannot see nowbecause your head is at a million miles an hour in a million places is cope. You will cope because you HAVE to. None of us, not a single one believed fot a second we could cope for many many different reasons. None of us know how strong we are until strength is the only thing left. You are tougher than you think. Speak to your best friend or closedt telative and get their help to start breaking the overall picture into bite size chunks that you can look at. When your house floods or catches fire etc you stand there and think where do i start?. The answer often is put down your dust pan and brush and put the kettle on. Then start from there. Youve made your first appeal for help and advice. You have been heard and you are no longer alone. Blessings.

Hi sorry to hear that it has taken so long for you to be diagnosed. Unfortunately this is true that it will be there for life but u just have to make the best of what u have. having a hyper four year old myself I know how tough it is to get anything done or get any rest when you have little ones. for a long time I felt so useless because I couldn't do the things I wanted to with my wee boy. have only come to realise now that I am doing my best and doing more that I am giving myself credit for which will most likely be the case for yourself. when I was first diagnosed I was so Down and in pain I didn't want to do anything but now that I have come to accept that there is just some thing I cannot change and the pain I am in will stay I have started to build a better life for me and my family

If you are not working you can claim esa and even if you're working you can claim pip it is a tough Road but please dont give up on it u will hopeful the support you need but unfortunately the benefits system seems to be getting worse :(.

The pain clinic can help alot of people but unfortunately I didn't get anything from it in the end I found what worked for me and stayed with it.

Also I know it's a silly thing but recently I attended a course where I didn't expect to get anything from and was so surprised when I got alot more from there than anything else so be open minded and try anything offered.

No doubt u are doing a great job raising your family and getting through but we all need support and help at some point in our lives so don't be annoyed or disheartened for having to ask. this was a big thing for me when I first found out only reason I am mentioning it. and don't forget the people around u know u are I'll they just don't understand it that's where it is up to u to explain and make them understanding as much as u can.

Hope u find ur journey with this crap illness alot easier than most people and get sorted with you pain. Sorry for the long post just wanted you to know there is people here who can relate to you and hopefully even one idea can help. take care xxx

Hi Terrieanne

I have had Fibromyalgia for almost 18 years, but was only diagnosed 9 years ago. Like Janet28, I was relieved to finally be diagnosed, as you do begin to feel like a bit of a hypochondriac when all tests come back negative.

I have found a great site with a good list of most Fibro symptoms is on the NHS website.

You probably won't have all those symptoms at once, but they can come and go. When I found it, I was so relieved to see that all the things I had were just part of the Fibro. As everyone else has said, all our bodies are different and we respond differently to different things. I do find that moving around keeps me more mobile. There are days when I know I just need to stay in bed all day to recover when I am really bad, but mostly getting up and doing stuff is better.

I am still learning to pace myself 18 years in and I am still learning. Mine has got worse over the last 3 years and I have had to increase all my meds. The pain never goes away completely, even with very strong pain killers, but pain meds do stop my body from screaming. There will be different things that can set off flare ups, and that will be unique to your body.

This forum is a great place for encouragement and learning more about Fibro. Although I don't come on here very often, when I do, I am always encouraged and love being able to encourage others too.

Good luck. It can be a really tough journey, but you will learn more and more how to live with it. xx

Hi. Well you have several good replies all ready. I have two children as well. A 3 yr old and almost 7. It has worried me that I will pass it to them, as I was diagnosed by my mom's doctor who had been diagnosed. So I know my fibro has been and could be passed- I don't think everyone gets it passed, but I honestly don't know.

Any ways, don't stress too much that will only make fibro worse. I find benefits from meditation (as my anxiety and depression make my fibro worse), stretching daily, range of movement exercise/ injury prevention exercises/ Tai Chi or any light slow exercises (they help much more than you would think). I have benefited greatly from juicing. I know it's not for everyone, but I would give it a try of you can. I rub diluted magnesium chloride oil on my muscles and it helps them relax.

Massages and going to the chiropractor regular have helped me tremendously as well.

Sorry, it's early still here in the states. I hope all my sentences made sense and I didn't leave anything out.

I am sorry you have been going through this and I'm sure you are scared, I know I was. But the more I listen to my body and figure this out, the less scary fibro has become.

Please feel free to post questions and figure out your body.

We are here to help, we have all been where you are and some are still where you are. Here you are not alone.

Take care××××

My daughter is 18 and has been diagnosed 18 months now. I think I also have it but much more mildly so I think it can be hereditary but not necessarily. I think there is a hereditary link.

I am able to work but my daughter struggles to attend college more than 2 days a week for about 3 hours. Everyone is different.

We have found massage, osteopath and heat help. Do you have a partner that could give you a massage? We use Linnex which is a heat stick like a deodorant stick and find it better than any medicine. For me it helps me get through the day at work and I would struggle without it. You only need to use a tiny amount so it lasts ages. Start with one swipe on painful areas and increase if you don't find any effect. You can only get it on the internet and costs about £20 with postage. Well worth the money though! Google Linnex. Electric Heat pads can also help.

I hope you find relief.

God bless.

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