Does this sound like fibro im scared im dying
Posted , 5 users are following.
A few years ago I first started to get involuntary movements when I was resting which started in my legs and now I get it all over my entire body. Following this first symptom I had sharp stinging pains in my groin and a burning back pains along with intense headaches. I then started to get pains down my arms and in my hands which are like sharp stings and cramps. Following this my stomach constantly makes very loud noises. Next I started to get painful stinging and aching in my left hip which followed in my right hip this happens daily for about two years. I developed white patches on my tongue which when I brush off it comes back hours later. I get pains in my throat everyday as if I'm going to get a sore throat. I have stinging pains every few minutes in my rib cage and now my sternum hurts and burns through to my back on both sides of my shoulder blades. I also get wires tightnings in my neck and near my collar bone along with the stinging pains in them too. I've had two smear tests clear brain mri clear two abdominal CT scans clear spine mri clear neck ultrasound clear hysterscopy and biopsy of womb clear camera up and down digestive system and stomach biopsy which revealed h pylori hundreds of blood tests clear but yet I am in constant pain. My doctor keeps mentioning fibro but the rhematoligst didn't even mention fibro he said too young as I'm thirty. I'm so sick of not finding a reason for all this pain I've been to a and e over twenty times and over a hundred doctors appointments. It helps to hear from people on here . I've read stories online with pains in their arms from lung and cervical cancer yet three X-ray later and two smear tests and god knows how many ultrasound all clear.
0 likes, 11 replies
Anonymous111 stasil29136
Posted
It sounds like you have idiopathic musculoskeletal pain - if you have specific tender points they can call it Fibromyalgia.
Are you double jointed? Any Rashes? Any problems with anxiety or depression?
stasil29136 Anonymous111
Posted
They occur everytime I try and sleep. My hand will jerk out then my legs then my head literally any part of my body jerks out. It happens one after another until I finally get to sleep. That started three years ago before the other symptoms started to happen . Yes I am very double jointed I'm flexible too. No rashes although I have been getting lots of bruises that i don't know where I have got them. No history of anxiety or depression I am a quietly confident person . These symptoms just appeared on me for no apparent reason my right hip Today constant sharp pains right deep into the bone and my sternum has a dull ache but every now and again I'll get a sharp pain right through to my back. The ones in my neck feel like a tightning cramp that happens at least ten times a day. The ones in my collar bone are more of a stinging sensation.hope this helps thanks for taking your time to reply
Anonymous111 stasil29136
Posted
They can occur more often if you’re dehydrated - maybe try drinking more water.
I’m glad they’ve done a Scan of your spine - that rules out dangerous things like myeloma.
You mostlikely have either joint hypermobility syndrome or fibromyalgia.
The reason the Rheum hasn’t seen you again - is that im afraid there isnt much they can do.
stasil29136 Anonymous111
Posted
They are different to twitches . I had a bad episode of them that lasted months of muscle twitches that happened constantly. They subsided thankfully. It's the bone pain that's the worst I am struggling with the pain . Rhemy read my notes as doctor has put I think fibro and he just said too young and nothing else about it. Thanks Ben x
Backtome stasil29136
Posted
Magpie2me stasil29136
Posted
stasil29136 Magpie2me
Posted
Hi magpie I have replied to Ben's message if you would like to follow. I don't suffer from depression I never have . These symptoms just appeared out of no where. Actually it started months after giving birth I'm not sure if that makes a difference . I have never suffered with post natal depression either I have had four children . He offered to send me back but I waited nine months to go and see him and he just did an mri of my spine which was all clear and didn't hear anything else . So it would be another nine month wait again ! I'm taking naproxren and paracetamol which to be honest don't really do alot. Thanks so much x
Backtome stasil29136
Posted
Have you ever had physio? Pregnancy can cause a lot of changes with posture or even cause mis-alignments in the spine, hips or pelvis that can lead to chronic pain. Weak core muscles can also be an issue for many mothers. I would first see a physiotherapist or chiropractor to rule out alignment issues or muscle problems and then if after 6 sessions your not feeling any better ask for a referral to a different rheumatologist.
I think at this point you just need answers. I am the same. I know if it is fibro than there isn't much they can do BUT until i know for sure that's what it is then I worry about all sorts of other things.
stasil29136 Backtome
Posted
TBH I r really don't think physio would work as these pains are more of a sharp shooting pains that come.and go very often and it's literally any place on my body . What are your symptoms if you don't mind me asking xxw
Backtome stasil29136
Posted
Mine started off as pelvic pain in pregnancy and that caused lots of muscle tightness everywhere. A year later I'm still struggling and I have stomach and bowel problems too plus some of the other things you mentioned. I'm waiting to see a specialist now. I don't know much about fibromyalgia so I'm not much help to you. Still waiting for answers ?
mandy72855 stasil29136
Posted
Hi stasil, sounds very much like fibromyalgia and CFS/ME, symptoms suggest both as I can relate to them. You need a doctor who believes, cos some don't.
Good luck