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For years I've had the following pains:
- prickly burning sensations in the toes and the fingers that feel permanent, my toe feels damaged, walking makes the burning pins and needles worse
- numbness in parts of the body and head that never goes away
- pins and needles in the legs and feet and in my head almost constantly
- extreme fatigue and muscle weakness, especially in the legs
- sharp tinnitus and ear aches/pain
- tingling in the hands and legs
- muscle twitches/fluttering mostly in the legs
- pins and needles in the eyelids and feels like something stuck in the corner of my eye
- itchy sensation all over the body and head - worst in the legs
... among other weird things.
They are constant and feel permanent. My coordination when walking can be off too.
I'm only 28 years old. I weight about 125kg. My diet for years has been atrocious and I think its contributed to these pains. But I don't know how it could cause all of them.
I'm currently seeing a nuerologist. A physical examination of relexes etc was normal. I've had a nerve damage test done.. normal. I've had a scan of the brain and spine.. normal. I've had a scan of the soles of my feet.. normal. Right now I'm waiting on the results of a few blood tests.
All I have found out in the past 2 years is that I have b12 deficiency. Which I've read up on. I could possibly have other deficiencies as well but never been tested for them. I wonder if it's possible to have nerve damage that doesn't show up on a scan? I'm just so confused. How can you feel all of these things in your body and nothing shows up on a scan?
Anyone know what I could have?
1 like, 16 replies
hi stephen well i have all these symptoms above & more headaches jaw ache to low mood , crying & its like my brain feels odd most of the days!..as you have had all the rest done i'm still waiting on seeing a neurologist been three months suffering my dr thinks its fnd based on the info i'l mentioned to him horrible waking up having these health issues & not knowning what it could be i'm currently bed bound as i have no energy & i'm so weak tired all the time i've heard lack of vitamins can effect the body & make u have certain things but also thyroid can have a big impact on the body if thats not working proper that can also make u have similar issues hormones levels too believe it or not these are the same can give you pins needles been reading up since my condition came on so i've explored maybe if no underline problem on scans try see if blood test pick up on anything just wondering if uve had any blood test apart from the vitamin level one ?
Hi Diane, I'm so sorry that you have these symptoms too. They are really horrible I am close to suicide. I am also basically bed bound. I can't walk far because of the pain in my toes and feet. By fnd do you mean functional nuerological disorder? I hope you can see a neurologist soon the waiting times are insane. I've only been able to see one after 12 months of waiting and I'm seeing him privately. Otherwise on the NHS I'd be waiting up to 5 years. I'm in Northern Ireland. Do you know how long you'll have to wait? is it on the NHS?
You mentioned vitamins. Yes I definitely think that's what has caused the damage. I know I have b12 deficiency. Maybe iron deficiency too among other things. I've never had blood tests done for anything else except my thyroid which has been normal. Since neither a nerve damage test or a brain and spine scan showed anything I got blood tests at the neurologist last week to check the following... ceruloplasm, serum copper, immunoglobulins and I think to check the protein levels in the blood. It might be helpful for you to request these too if none of the tests you get don't show anything. But I hope they do.
How long have you had your pains? for me it began gradually about 5-6 years ago and have gotten worse over the years.
Take a look at my post. I feel the same symptoms as you. we need help fast. I can't take much more its painful and quality of life is very low.
Hi Chase, are you still seeing a neurologist now? mine has also suggested my pain is "psychological" which it most definitely is not. I am also at a hopeless point.
Yes I have a neurologist who has done a "Full workup" with no conclusion. Vitamin levels are fine. Everything is fine according to them for now. I have a couple of blood tests I am waiting on. But I am hopeless and have no clue what to do. I had to drop out of school and can't do any activities I enjoy... 100% not psychological as I notice physical changes.
I am basically at the same point. I am waiting on some blood tests results but I don't have any hope of them showing anything. What kind of physical changes? for me everything looks normal on the outside and on scans but I still feel the pain and the damage.
hi stephen i been suffering for 3 months been a bit of a roller coaster because when i think i'm getting better along comes another issues yh fnd is neurological functional disorder dr reckons off the symptoms that i've told him i'm experiencing feeling hopeless in life like i'm existing but not living & eventho i sleep i always wake feeling i've not slept so mentally & physically draining a 100 yr old has more energy than me lost all interest in anything life has no laughs & no sense of any enjoyment so i kno how u feel on the rails, i hope its not long b4 i see a neuro cause the long it take the more i'm driving myself crazy feel my symptoms are getting worse day by day ur only young so i hope u get answers soon & i'm hoping uve got some support behind u
I feel very drained as well.. part of it is my diet I know that. But still I shouldn't feel this bad. I also feel like a 100 year old even though I'm only 28. I just cannot go on for another possible 60 years with this pain. You shouldn't have to wait so long but unfortunately there aren't many neurologists. I hope you get help soon x
aw stephen i kno people keep saying to me keep ur chin up & i'm stronger than i look but deep down now started feeling like a lost little girl ano people r just trying to be nice but they aint living the way we are suffering day in day out and what gets me the most is everyone i speak to will just say ring these mental health lines like there going to stop the pain or make my life easier some way somehow..the times i've said to myself i cant do this anymore nothing in life seems enjoyable & i find myself crying twice a day because the way things are but i kno i just ave to take 1 day as it comes now easy said than done i kno but will power has to crack in at some point hey maybe i'm dreaming a bit there but 🤞 xx
Diane I experience this everyday because I also have autism too. So people say its all in my head or psychological. I know exactly how you feel.. and it always feel like you up against a brick wall with the NHS and doctors. It takes sooo long just ro see someone and then you're only there for less than 5 minutes and they barely listen to anything you say. Then if nothing shows up on a scan they give up on you.. I am at the point now where if I don't receive help soon I will have to commit suicide. x
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stephen i kno everything you mention to them drs its like they'l say its your depression or anxiety well your bound to feel depressed when ur in pain constantly & cant do much or cant seem to get in any happy place there is only so much ur mind & body can take b4 ur up against the odds
& the not knowing why plus the feeling things are not going to get better because u've had the test & everything coming back normal is frustrating even talking about them health issues r draining i kno this because i can related in many ways like keep going over old ground waking up every morning same thing day in day out living in hell just like we exist but not actually living as one should if this makes sense!.well drs rang me today chucking meds my way think it was meds that caused my condition to come on so scared to take anything now so i doubt i'm helping myself by not taking any & when i try to take meds for some reason i feel like i'm fitting of them so i'm a point of despair all a bit overwhelmed scary h8t what is becoming of me or even whats happening!. this is an no going battle for many of us!.
plz stay strong even if not for urself for ur fam as a mother myself i'd be praying every single day for my loved ones & i bet u ur family are the same for u!..really wish i could help more sending u all my luv & if hugs could help right now i'd be there to give u one! x
You're right about being depressed when you in so much pain. I feel like people without pain don't understand this. They say well you have to "make an effort" or "help yourself" it's very frustrating. As for the doctor I always write down my symptoms on paper in case I forget some of them and give it to the doctor. But by the next appointment they've forgotten and ask what they are again! even though they wrote them down themselves. You just can't get through!
you are so kind and I hope you get a diagnosis and get better because you don't deserve the pain.
aw thanks stephen i think i'm in for a very long wait but hoping this site keeps me sane in the mean time!.. ur spot on that drs dont seem to understand because to them its just a job i suppose & passed pillow to post because at the end of the day they dont have the answers so its on going frustrating as it is 😦
Hello, I am wondering by now what diagnosis's came from yalls symptoms? I have all these symptoms my tests are normal too. Spinal fluid testing, EMG, full mri from head to spine, autoimmune labs, ultrasound of legs.. Today im seeing a disease specialist to run tests for foreign virus's and common diseases. All my symptoms started after being sick. I'm at a loss of what to do now because nobody can tell me whats wrong. I'm scared so scared of leaving my children without a mother and at the same time i have thoughts of just ending it all.. I'm trying to fight through this daily but getting tired. Hope I can get a response !
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