• PLEASE NOTE - the TEAS facebook page has been hacked, take extreme care when visiting the page, for further information visit here

Possible Fibromyalgia, Diagnosing It And Coping With It.

Status
Not open for further replies.

A&T

Adult Guinea Pig
Joined
Apr 23, 2011
Messages
4,138
Reaction score
3,818
Points
1,175
Location
London
Helloooo :)

So I was actually reading through some comments from another thread and a few people mentioned having fibromyalgia.
Now I'm not normally one of these people who self diagnose, but I've been having a lot of hip problems and other problems which haven't been able to be diagnosed for around three years now.
I've always had intense leg pain ever since I was little, the doctors use to tell my mum to stop worrying it was growing pains, she never use to believe them but when she tried to argue they went with the over protective mother stuff. Anyway it use to keep me awake at night, it was horrible the only thing that would sort of work was a really hot flannel on my leg (knee particularly) it would just ache, like the worst cramp you've ever had, but it wasn't cramp. Anyway I still get that now, and when I was about 15 they sent me to have a shoe wedge fitted because apparently I had one leg bigger than the other and that was the problem all along... So I was given this wedge for my shoes but I never wore it, the leg pain didn't go away even when I did wear it.
Anyway, time went on I got on with my life, at this point I should mention I had a lot of mental problems growing up, anxiety, eating disorders etc. I was also bullied and didn't go to school because of this, which led to me not being able to go out alone and having panic attacks when I did go out.
I managed to get over this by counseling and went to college for 3 years until 2013 doing Animal Management, during doing my course I began getting this really bad pains in my hips, I mean... sometimes I couldn't even walk, it would just get stuck, or feel like it wasn't going to take any of my weight. I managed to complete my course, however my hips have got A LOT worse.. to the point where I cant say to someone oh yeah we'll do this because I don't know how my hips are going to be.

So the hips, I cant put my finger on anything that triggers it, I've tried exercising as far as I can see it makes it worse. Sometimes i get stuck in a certain position in bed where i cant move so either have to call out for my mum or just stay there. Its the worse pain I can imagine when its bad, it radiates in my hip and just...is like an ache with the occasional sharp pain if i move it in the wrong way which then shoots down my leg. At first it started in my right hip, then went to my left but the majority of the time its in the right.
I've had xray's that showed nothing, I've had MRI's that showed nothing, and ive had physio which just made things dramatically worse and gave me hip pain AND lower back pain. The physio even said yeah I don't think this is a case for us. Also, before i had physio i saw this guy who said i never had one leg bigger than the other and never needed a wedge for my shoe, so thank god I didn't wear it!

Anyway, while I was at physio he gave me a leaflet for fibromyalgia so I read thought it, and was horrified at how many symptoms I had but thought were none related...
I had bad women times, I have a thyroid problem but still can't really go a day without a nap or feeling extremely tired. People take the pee out of me because I always muddle my words or they dont come out right and I'm dyslexic. I have pain somewhere on my body everyday, I get a lot of headaches, I cant take pain things that wont be painful to other people are painful to me so much so my boyfriend sometimes says 'god its like you have brittle bone syndrome' because I literally say ouch to everything.

I've been back to the doctor who asked me if I got pain in my elbows which...is a strange thing to ask, but sometimes they really ache, I explain it as 'I can really feel my elbows today', anyway he's sent me for blood tests for rhemetoid factors, a full blood count and to look for some fluid that would be high if i had muscle or bone wastage.
On my way out he said 'This does sound like a mental anxiety thing though, and if it is, it will be a very long process to diagnose and a hard thing to prove', it didnt feel me with a lot of hope.

That was really long winded, thank you if you managed to get through it all! My question is, have you got fibromyalgia? if so, how did it first start? how was it diagnosed? and ultimately how do you cope?
I should also point out, I'm only 22.
 
I don't have any advice but just wanted to say. Hope you get a solution soon and start feeling better.
 
  • Like
Reactions: A&T
I have been diagnosed with fibromyalgia.It started when I broke my elbow,a bad injury can trigger it.I have constant pain everywhere, can't walk in a straight line some days, get my words mixed up and fall and trip a lot.My spacial awareness is crap.If I'm really bad even if my daughter leans on me it hurts.I struggle to stay awake all day and if I do too much my body just refuses to function properly and I have to sleep.They diagnose by pressing certain points on your body and if it hurts you've got it but they do eliminate everything else first.I can only work part time and have to be sitting down.I take an antidepressant that eases the pain.I also take a calcium and vitamin d supplement as if you have it you are deficient in calcium, vitamin d, magnesium and zinc.People tend to think you are just lazy or drunk if you are shaky.
 
I have been diagnosed with fibromyalgia.It started when I broke my elbow,a bad injury can trigger it.I have constant pain everywhere, can't walk in a straight line some days, get my words mixed up and fall and trip a lot.My spacial awareness is crap.If I'm really bad even if my daughter leans on me it hurts.I struggle to stay awake all day and if I do too much my body just refuses to function properly and I have to sleep.They diagnose by pressing certain points on your body and if it hurts you've got it but they do eliminate everything else first.I can only work part time and have to be sitting down.I take an antidepressant that eases the pain.I also take a calcium and vitamin d supplement as if you have it you are deficient in calcium, vitamin d, magnesium and zinc.People tend to think you are just lazy or drunk if you are shaky.

Gosh that sounds really bad. Sometimes I cant walk either if I'm having a bad day my hips just feel like they'll collapse bellow me. Its really interesting hearing it from someone who actually has it. I spend a lot of my days sleeping, especially at the moment as I don't have a job. I cant risk getting one and then not being able to go in but not be able to give a diagnosis. A lot of people think i'm just being lazy also.
 
I have fibromyalgia, I was diagnosed by a rhuematologist last year. It's not a nice condition and I find myself in constant pain, but I have no other option but to cope with it. Thankfully I have extremely supportive work colleagues and an excellent husband who helps me with anything and everything I need, including the piggies. I try not to rely to much on meds even though I'm on 4 different types a day (I also have arthritis and hypermobility). It's essential to get a definite diagnosis as it relieves a lot just knowing that someone understands and you aren't making things up.
 
I have fibromyalgia, I was diagnosed by a rhuematologist last year. It's not a nice condition and I find myself in constant pain, but I have no other option but to cope with it. Thankfully I have extremely supportive work colleagues and an excellent husband who helps me with anything and everything I need, including the piggies. I try not to rely to much on meds even though I'm on 4 different types a day (I also have arthritis and hypermobility). It's essential to get a definite diagnosis as it relieves a lot just knowing that someone understands and you aren't making things up.

That's lovely you have so many people around you! As far as I can see, its a tough thing to have to deal with and having people around you that are really supportive must be such a relief! Especially at work! Yeah, I just want a diagnosis now, its hard to explain to people whats wrong with you...when you don't even know. One of the doctors I saw even implied that I was making it all up...because he couldn't see anything wrong with my hips or on the xray.
It seems to be worse in winter, I get quite depressed in winter when its so dark and gloomy.
 
I cried to a few doctors before they took me seriously and referred me! Thankfully the rheumatologist I was referred to was absolutely fantastic!
 
  • Like
Reactions: A&T
I was really lucky with a very supportive doctor and great consultant.I was also really impressed with the job centre.When I lost my esa I was panicking as I knew I couldn't cope with full time work.I now have a ddisability officer that has restricted my job search to part time work that I am sitting down in.He also got me into a training course to brush up my office skills and that is flexible too.I have had to give up four of my piggies but can cope with the six I have left.My kids help me a lot.It is manageable just not much fun, you just have to listen to your body
 
Push at the docs to be referred to a Rhumy specialist :) for 3 yrs I kept telling my doc something was wrong...he kept saying it was my diet ( never had a bad diet)... wasn't until I collapsed at work and had a major op did anyone listen ha! Good luck with it :)
 
I second the pushing the doc for a Rhumy refferal. Best thing my doc ever did, but that's after months of telling him I wasn't right and I was in pain. I finally broke down in the surgery infront of a doctor i'd never seen before! That sorted it!
 
Sitting up late & going through threads and noticed this one.
I dont know how severe your ED was and how long you went through it for, and it doesnt account for some of your symptoms. But if it was anorexia that went on for a long time, have you been tested for osteoporosis? because you certainly have some of the symptoms & because you said you had an ED it made me wonder. I'm not asking for an answer back, just letting you know that if that's the case, it's a posibility?
You'd need a DEXA scan to diagnose it though because normal Xrays can't measure bone density properly.

Anyway, I know this threads a few months old, so I hope you got an answer! :) x
 
Sitting up late & going through threads and noticed this one.
I dont know how severe your ED was and how long you went through it for, and it doesnt account for some of your symptoms. But if it was anorexia that went on for a long time, have you been tested for osteoporosis? because you certainly have some of the symptoms & because you said you had an ED it made me wonder. I'm not asking for an answer back, just letting you know that if that's the case, it's a posibility?
You'd need a DEXA scan to diagnose it though because normal Xrays can't measure bone density properly.

Anyway, I know this threads a few months old, so I hope you got an answer! :) x

Thank you! I haven't yet got a diagnosis no, ive had blood tests in which nothing showed up. The doctors are baffled! They're sending me to a rheumatologist now, but I couldn't get an appointment till may! When I go though I will defiantly ask about the xray! I did have a long term eating disorder and you were correct along with other ED.
Thank you for your recommendation though! I will defiantly mention it! X
 
Rheumatologists are the best place to go. That's how my fibro and athritis were diagnosed.
 
  • Like
Reactions: A&T
Hope you get sorted soon. I'm in 'no diagnosis' limbo too at the moment, waiting to see rheumatologist, and it's hard to keep your spirits up. I'm trying to 'eat clean' to see if it helps . I got the book Deliciously Ella and it's inspired me - she has a blog and began it when she changed her diet to help manage her own illness - I think she has POTS. I'm also frustrated by the lack of understanding, awareness and support for people with chronic illness. It's so debilitating and isolating and the medical profession have no sense of urgency because it's not life - threatening, even though it leaves you unable to function in your life. Hopefully the rheumatologist will help you, so sad at such a young age. Much love.
 
Status
Not open for further replies.
Back
Top