Hi I'm new here but I'm lost and wanting just to tell you little about things going off.
The Dr and neurologist are fobbing me off no help support I'm so alone I'm 29 I have my partner now as my full time carer and I hate it, I wrote down every symptom I felt and what happens and because there that many I really don't think they no what it is so they just FND you as its more of a safer option 💔
Symptoms
. Wide spread of chronic pain top to bottom of my body. But it hard to explain but I get different kinds of pain I.e ranging from stabbing especially in back and ribs, general pain but times 10, shock electric like I've been jabbed makes me jump, much more ...
. I got diagnosed with chronic pain syndrome on top of vertigo and that in general wipes me off my feet can't have anything touching my head neck area the world around spinning feel sick having headaches.
. This comes under pain but I class it different in a way,
I have episodes were from my coxet bone to my neck bone it like I get it to the floor drops me pain and spasms mainly in bum area then it like a rocket shooting off up your spine to your neck bone then I burn. It seems to get more often. I also loose feelings in my lower legs for around 5 min then pins and needles I also loose sort of my feet coordination off balance aswell. Weak and tiered have to go bed.
. My whole body feels like it on fire like someone have put petrol inside my viens and ignited it I have pictures and videos that the burning sensation isn't to me a sensation as its coming through my skin. They have gave me some cool cream but even that now isn't really touch anything anymore, it's hurt so bad and sometime painful but it's like I'm watching my self like that and can't stop it. My skin goes from white to red or red to white then sometimes marks me with a blister.
You can also see on the videos and obviously myself and partner that it burns through n burns my hairs they go black. WWHATTTT!!
. I get a crawling sensation in my whole body mainly my face but everywhere, it like having 10000 mini insects inside you crawling in like my mouth making it sore tongue ,lips up my nose , in my eye lashes and eye brows mainly they are but that feeling were u feel that sensation and nothing helps it that's bad sometimes I have to slice my own body to stop it been to intense now how that right?
THE crawling in my mouth area makes me and leaves me with a horrible taste it crawls my whole tongue roof of mouth it is literally like a feather hate it.
. The pigment in My face especially has now nearly gone I don't feel me any more , I got parts in my hand, feet to
. I can't season my food as hurts my mouth can't also have fizzy drinks also hurts my mouth this sounds crazy.
. Swallowing is now taking its toll, I'm finding harder and harder to Swallow especially meat, I find it difficult with a lot of food so I stick to food that's easy going down.
. Sexual situation I'm transgender turning into a male but my feeling of my private area has nearly gone were I can orgasm I feel so embarrassed especially with my partner but she gets me.
. Pride that's a big thing for me ... I have lost all self of pride nearly I have to be naked for one most of the time I less I have to go out as the clothes touching my skin is to sensitive and irritates. My confidence with my skin .
. Temperature is also a massive thing it has to set right the temperature in my flat to make sure I don't burn or it to cold or it set all the symptoms off. Even the shower temperature intolerance has to right going outside the weather I can't be hit by the sun as it burns me but then I can't or I have to wrap up when it cold so I feel house bound most of the time.
. Fatigue is starting to kick me ass feel more weak in my muscles and tiered were its stopping me getting out of bed or daily task can't stand on my legs to long, my grip of my hands are going my joints are stiffening up I'm in bed 4 to 5 days now out week what a life NOT.
. I GET OTHER SYMPTOMS LIKE....
. Wetness drips on my legs
. Discolouration of skin
. Muscles weakened
. Fuzzy sensation like your TV lost signal and it fuzzys.
. Struggling to settle sleeping
. Feel my brain on fire at times
I am 29 year old and feel a cripple in my self , I went from very active playing semi professional football to on day well half a day my whole life got turned upside down. I'm half the person I was and I can't seem to accept it I don't want to.
I no it looks a lot but there more in a way I've dealt with this whatever they think for 2 years and it just got worse and is worsening. I feel no-one believes me so I'm that paranoid I take pics of everything I'd done a book to show my neurologist as I'm at last straw I've been on my knees begging for help to crying for help to angry I'm getting to the point I'm done. No professional want to help as it to complete that's what I keep getting.