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IAmParadiseSeekerJW

New member
Joined
Dec 10, 2014
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1
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Undiagnosed
Diagnosis
00/0000
Country
UK
State
Nottinghamshire
Hey :) I never know what to write here so please forgive me for rambling a little!

I'm a young woman from the UK and 10 weeks ago tomorrow, I fell ill...I've been through a lot of emotional abuse and other problems for years at home and left 2 years ago late January. This has been an ongoing problem and it's something I deal with each day. I suffer from IBS, PCOS and depression too. I also suffer from migraines. I began getting headaches around the age of 12 or 13 and eventually as I hit my late teens, they became or graduated to Migraines. Some days i'd be crying with the pain and i'd have to stay in a dark room for the day in bed.

9 weeks 6 days ago to be precise lol, I started getting a bit achy after having come back from a meeting in the evening, and then developed the worst migraine i've ever had. I was in absolute agony and felt so ill but thought, like most, it'd go away after a day had passed. The lady I live with (like my surrogate mum) went out for the day so I was left in and when I finally managed to get out of bed, I felt so weak that I kept having moments where I felt i'd pass out. Later in the day I did pass out alone in the bathroom and I knew I had to do something because I've only passed out once before and I was about 13 at the time so I was a tad concerned. Went to hospital the next day (they called me in actually) and got whisked off, hooked up to a drip, bloods taken, they gave me tons of tablets and man it took the migraine off! I then got sent for a CT scan and then they wanted to do a spinal tap / lumbar puncture later in the day so I had to stay in over night. All my results came back clear except a little infection in my blood and apparently, when they do a l.p/s.t they measure pressure? Well, that was too high. But everything else was normal so they just told me to go home. They did prescribe me co-codamol though and sent a referral through for me to see a Neurologist.

Left hospital, pretty achy around my back, hips sort of area and assumed this was all related to the s.t/l.p they did but although this eased, a new aching came in. I began to get extremely achy all over my body, weakness in my limbs, tired throughout the day, unable to sleep at night and when I finally got off (3-4am) I was sleeping all the way through until about 2pm the next day. Hands and feet were always cold (never a problem before), kept getting pins and needles especially on my left side, lightheaded - feel like i'm going to collapse often, shooting pains in fingers and toes, getting stiff quick - find it hard to get up after having been sat a while, and other symptoms (can't remember much else at the moment..i'm tired..barely slept this past week!).

Went to the docs 2 weeks later, he said "You've had a virus BUT it sounds like Fibromyalgia". So he quickly explains it, prescribes me Naproxin to take once i'd ran out of Co-Codamol, and sent me on my way. Things hadn't improved almost 2 weeks later so I went back, saw a different doctor, and he said the same "sounds like fibromyalgia" but then he told me I ought to do some exercises and this would help a lot. He then sent me on my way. Finally, my letter from the hospital came through for my appointment with the Neurologist - saw him 25/11/14. I'd been referred about my migraines but explained that I have had a few bad headaches but not getting any like I had been and that I was more concerned about the other issues I was dealing with (as I've written above). He checked my reflexes, my eyes, etc and told me, "Inflammation of the joints". I was thinking, "what?!". Yes I was and am getting pains in my joints / that area, but it seems to be more muscular than anything else! But anyway, he sent me for blood tests. I get to the room and told the nurse, "I feel really really weak" but she insisted on going through with the blood test and I passed out as I expected...I wasn't too happy..Blood test results came back on the friday (28th?) and I saw another doctor at my surgery and she told me, your results have come back fine (he checked for inflammation and a few other things) - which I expected - and "it sounds like you have Fibromyalgia, but we can't diagnose it 100% and we need to wait for the neurologist to finish with you". I asked to be referred to a rheumatologist but got the same answer.

So...Right now, I am in pain, struggling with all these things, the cold is making it worse, and I'm so sensitive and emotional i'm shutting myself off to other people, isolating myself and feel so down right now...I'm 19, was leading quite an active life doing volunteer work, looking for paid work (hard in the town I live in), and being a teenager I suppose, but now, I struggle to even shower myself, to cook properly - I can't lift a pan full of water! -, making my bed...I have that to do tonight and i'm dreading even attempting it..taking my bed sheets off this afternoon and then washing the pots was enough for me!

Anyway...As I said before, sorry for the long introduction I kinda knew i'd give, but any advice? Any thoughts on whether this is Fibro? Or, if it sounds more like something else? Anyone know how I can cope? I am so confused, lost and troubled by all of this and i'm not really getting the support I need right now..:-(
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
PA
First off hello and welcome to the forum. I wish I had a answer that would solve all your aches and pains, and set you off on a road to recovery, but as you are finding out with fibro it becomes something you must learn to deal with. On the forum we try to share our ways of improving your life by resting more and learning how to cut the pain. Also we all try to support one another by answering your questions and really listening when you just need to vent.

We talk about the different medications and what works and what did not work, thus increasing your knowledge in self care management. Sure you need the right doctors and their ways of treating you, but to avoid feeling scared and lost, you need to take a active role in self care of some symptoms. I suggest you read through the posts in the chronic pain section, as well as, alternative methods. Read the older posts , as well as, the new ones. Join in by posting and asking questions, and check out the off-topic posts too.

Glad you found this forum and I look forward to reading your posts. :)
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,549
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Welcome , ahh I wish it was that easy to say what you got. I'm afraid it's more of ruling out everything else. And don't we all wish we had a test as we could get the help we need faster. So it's going to be just that.once they have ruled out everything and they still tell u it's fibro then u can bet your bottom dollar it is.
 
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