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Hobbit01

New member
Joined
Feb 16, 2015
Messages
6
Reason
Undiagnosed
Diagnosis
01/2015
Country
UK
State
South Lanarkshire
Hi Guys,

Just after some of your advice if possible. My doctor thinks I have Fabromyalgia but i'm unsure so thought I would come and ask the experts!

I got ill around 3years ago where I started to experience weird sensations in my body. At the start it felt like head rushes and almost like my head was filling up and dizziness. I kept having some sort of episodes and ended up in hospital with a suspected heart attack. To cut a long story short it turns out I was diagnosed with Hpylori which is just a standard stomach bug. All the time I was in hospital weird things kept happening and I started to twitch all over.

Over the course of the coming months / years I found myself at the doctors almost every week. Going from someone healthy that had rarely been to the doctors.

My main symptoms are muscle pains, nerve pain, burning legs that come and go, burning scalp that comes and goes, all over body twitches and pluses, vibrations going through my body and legs in particular, feels like something attacking my throat, facial vibration and pressure in the head that seems to come and go. At the start it felt like to me that something was in my body attacking things and my body didn't like it. When my legs first started to get sore it felt like something working its way through the muscle and they would twitch like mad. My chest seems to burn on and off also. At the start it felt like organs in my body where heating up as if something was attacking them.

On doing some research on the Internet I found a Lyme Disease forum and things seemed to fit with that. I had a positive test diagnosed in America (i'm from the UK) and the doctors over here said that the whole Lyme thing is a money making scheme and the tests aren't approved etc.. Just incase I started treatment anyway and so far don't see much improvement. Every time i'm going to the doctors he thinks that I have Fabromyalgia. So here I am taking all sorts of pain meds and nothing seems to be making a dent and no-one seems to know whats going on with diagnoses from everything from Post Viral Fatigue to Lyme Disease and Fabromyalgia. Does this story sound familiar to anyone on here?

Im about to go to the America on holiday and was wandering if there was any diagnostics tests or any specific doctors that I should be going to see. So far I saw a Neuro and a Rheumatologist and an ID Specialist and no one seems to think theres anything serious going on, but try tell that to someone thats experiencing all these weird symptoms and things dont seem to be getting better...

Any help would be greatly appreciated and thanks in advance!...
 
Hi Hobbit01,

I saw a rheumatologist who diagnosed me. He used a pain measuring device on the tender spots. I have never had any of what you talk about. My fibro is more of a constant aching all over especially in my neck, shoulders, etc. It gets so bad that some days I cry.

I did have a bout of vertigo two years ago. It was horrible. I felt dizzy and could not function. I saw an ENT who diagnosed me. It took about a year to clear up completely. No one seems to know what caused it. The spinning feeling was horrible! I can relate to you on how horrible that is.

I live in the U.S. I do not know much about Lyme's Disease but it is a real thing. It does sound like you have some of the symptoms of it. They should have done a blood test to diagnos you. If not, you might not have it.

Have you seen a neurologist? It sounds like you have a lot of symptoms that are coming from nerves or the nervous system. It sounds worse than anything I have been through with FMS. I feel for you and hope you find help.
 
If you have FM or not, I find it aggravating the dr. said it is nothing serious! I'd like some of these Dr.s to live in my body for a week and say it's nothing serious!
 
Sounds like fibro.it does take time to rule out everything else. For me fibro makes me stiff like my joints are sore ,I get mussels that jump about. I get dizzy and I ache like I have flu.i have meds for pain and meds to help me sleep. Nothing u take will ever take the pain Or the aches away,it's something u learn to life with. I also get sore skin like sun burn. Welcome to the site xxxx
 
Thanks or getting back to m guys, its much appreciated. I don't really have tender spots as many people describe although I do have some areas of interest we will call it.

It just very confusing as i'm sure most of you already know just being bounced from specialist to specialist without getting anywhere. I was reading about Fabromyalgia but i'm not 100% sure it seems to fit.

One of the doctors said to me 'Sometimes we need to wait until things get worse before we can diagnose it" having been in pain everyday I was just thinking, "Are you joking!". I'll keep poking around, BFS Benign Fasciculation Syndrome also seems to be very similar.

I can feel something happening that your not in control of and I think its time to grab the bull by the horn and do my own investigations as theres no sign of things getting better!

As said, much appreciated guys and if anyone has any advice that could be useful please just let me know.

Cheers!
 
Hobbit01 welcome to our family.

first i want you to know i have FM and lupus. now i dont want to scare you.
all of those things are symptoms of lupus. specially the muscles jumping. ive been dealing with the muscles and they will actually
lift my arms and legs off the couch. lyme does have some of the same symptoms and you had that checked out.
have them check for lupus. most folks with lupus also have FM too.
check with a lupus forum as well and you will see what im talking about.

im not sure the doctors here are any better. once you get to the us. check with the local hospital/case worker there for a referral.
ive gotten very good ones from my hospital here.

stay strong and keep researching!
im sorry for your pain. please friend me and PM me if you like.
 
Hi cmetryme,

Thanks for replying. I got checked out by a rheumatologist at the start and when I was explaining my symptoms she was looking at me as if she was thinking "aye right!". The reason I got referred to her was that I had a mildly positive ana test which she said isn't really indicative of anything and is of no significance. So I kind off stopped looking at Lupus.

It certainly wouldn't hurt getting a second opinion right enough and thanks i'll try asking in the Lupus form also. To be honest with you Im just at the stage where its being going on for 3 years now and I just need to find out whats happening regardless if its something bad or not so bad. At least then you know what your dealing with, if that makes sense.

Thanks again!..
 
Hobbit01 welcome to our family.

first i want you to know i have FM and lupus. now i dont want to scare you.
all of those things are symptoms of lupus. specially the muscles jumping. ive been dealing with the muscles and they will actually
lift my arms and legs off the couch. lyme does have some of the same symptoms and you had that checked out.
have them check for lupus. most folks with lupus also have FM too.
check with a lupus forum as well and you will see what im talking about.

im not sure the doctors here are any better. once you get to the us. check with the local hospital/case worker there for a referral.
ive gotten very good ones from my hospital here.

stay strong and keep researching!
im sorry for your pain. please friend me and PM me if you like.

Thanks for the advice. I will check with a local hospital!
 
ana tests are not a good test as you can show neg one time pos next time.
do you have any rashes on your body? if so get to the doc right away and have them do a biopsy.
your aye right doctor is not for you. she should have done other tests on you. im sorry but im no doctor but im pretty sure
its lupus. please get it checked by someone who knows lupus. roomys dont know S...T. sorry.

fibro is nerve pain all over your body. knives and burning is the nerves. muscles will only twich/shake with the nerves.
fatigue and brain fog come from the lack of sleep, due to the nerve pain.

i pass this info on as i have spent an un-goddly amount of money on this last year.

knowledge is your tool, use it.
 
Thanks for the advice. I will certainly get it checked out again with what you're saying. Who do you think would be the best specialist to get it checked out with? is it normally diagnosed by a rheumatologist or there any other tests you can get. I don't seem to have any odd rashes or not noticed much that couldn't be contributed to getting older! :)
 
im not sure what state your are going to be in. you can do a search on lupus doctors specialty.

as i had the rash on my back since i was age nine. thought it was due to severe sun burn id gotten. never went away.
dermatologists kept trying tropical creams that just dulled the redness. they were no help at all.they just gave up.
i went to an allergist. she did a biopsy.
 
Thanks, I'll look out a Lupus specialist and get a 2nd opinion! It's North Carolina I'm going to. I've never been there or heard the accident. So I'm super excited.

At least it will give me something to do!

Thanks again!
 
thats a nice state. i wish you well on your research. i hope you find some relief.
i sent you a message with a website for you to look into.
 
Hi Hobbit01,
I know its like a month later, but I just joined and read your symptoms that match mine. I have been diagnosed with Post Viral Fatigue Syndrome, BFS & Fibro. I found most if not all of my symptoms on aboutbfs. It would be worth taking a look at it, don't be put off by the home page. My ANA result came negative. You should visit a neurologist and ask for an MRI (with contrast), EMG & NCS.
If you have already found out what you have, please let us know.
 
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