Tingling & Numbness

Thanks for the reply littleme.

I am really not stressed.

I actually have a patch of pain where it hurts when food passes but even water sticks, then it comes gurgling back up - it is very painful.

I didnt know numbness and tingling was a part of CFS.

To be honest , I hate the phrase CFS. What it means to me is "We don't know" because SOMETHING is causing this stuff, it's there for a reason, not "just because".

Driving me nuts at the moment :-(

ask all the long term sufferers and they will say the same.. each time we have a relapse with new symptoms we second guess our diagnosis.. theres a period of denial.. then sheer horror as you realise you have a whole new range of stuff to deal with. But given enough time you do eventually get your head around it. I was in such a state with myslef this time last year... truly i could never see myself living any type of normal life again, leaving the house to walk the dog for 5 mins was such hardwork let alone trying to run a home , work etc.... but you do get there.. never quite the same as you where.. but you adjust.

Littleme: I always like reading your posts. They help me not feel so alone, with all these weird symptoms. 

Thank you Jackie  [Description: cheesygrin] ... the forums have been a great help to me too.. there is so much weirdness thats goes with this condition that finding others with the same issues does bring some comfort . At least we then dont fell like we are totally nuts  [Description: evil] ... no one understands just how hard it is to live with day in day out, some days you go to bed feeling not so bad, only to wake the next day feeling like you’ve been hit by a truck and backed over for good measure.  It bothers me on some forums how they all gang together to just feel sorry for themselves, dont get me wrong we are all entitled to a bit of self-pity... but long term it solves nothing and robs away what little bit of joy thats left in life. I dont want to be that person... i hate what this condition has done to me and the years it has robbed me of, mostly how much i missed out on while my children were growing up. So i refuse to waste another second of what’s left. It’s a hard road to travel.. but i have to say it makes it much easier to know im not travelling it alone  [Description: cheesygrin] .. and places like these are the difference between having hope and falling into that pit of despair

Littleme,

I seem to be noticing a trend here: longer term people with CFS/ME developing nerve issues, like tingling and numbness. I can't believe my specialist seemed surprised at these symptoms. Even the NHS brochure mentions nerve pain. I'm getting more information here than I've gotten from my doctor. 

Your right there does seem to be a progression of symptoms.  But it does not happen to everyone, a lot just seem to get the tingling or as some describe tight burning sensation rather than the pain. My mum was diagnosed with ME almost 20 years ago after a bout of glandular fever and so far has had any nerve pain issues. She was very surprised by my problems and how severe they were. But my own doctor picked up on it straight away, even though he admitted he does not diagnose many cases as severe as mine had turned into. I guess its just luck of the draw. If i think back i have had the tightness and burning and tingling for many years but just put it down to circulation issues, it only became a problem when the burning turned into full on pain, so much so that even holding a knife and fork to eat was a struggle some days, washing my face felt like some having my skin rubbed off, it was that sore. I could not wear make up for 3 months as even the soft makeup brush felt like rough sand paper on my skin  Its most definitely a neurological condition with immune system influences and is infact classed as that now here in the UK.  It took alot of time and searching to find any reference to nerve problems with the ME here on the internet and i tried another 3 forums, all seemed to think i had fybro as they had not heard of the nerve issues. But clearly when you read deeper they are explaining the symptoms differently which is why its been put down to circulation problems, makes no wonder the doctors are confused when the patients find it hard to put into words what they are experiencing ..

Yes, there is a huge amount of confusion about this illness, partly because of the variety of symptoms. Research seems to be severely lacking. When I look at AIDS, for instance, the gay community was so forceful in getting out the word, that research was done, a marker (the virus) was found, and treatment followed. Here we are, people with CFS/ME, an illness that's been around for so many years, and still no marker and no treatment.

Thankyou:  you are just confirming an isue that I was starting to become concerned about.  In the past few months, I have been finding that after lying down for a rest/sleep, My lower limbs start to become numb, with tingling sensations. It was confusing me, as having spent 30 years being a Registered Nurse, and not understanding why these symptoms were only appearing when lying down, and only in muscles, I knew it was not related to any other medical condition, However, I had not read re same symptoms in any other site on CFS/ME: now I am reassured;  what I do to stop the numbness/tingling (enabling me to rest/sleep) is wear some TubyGrip on legs and for some reason this assissts the muscles, and assists my sleep/rest.  (I also realize now that it is not just Restless Legs Syndrome, as some people thinl)..  Thankyou. 

Thankyou:  you are just confirming an isue that I was starting to become concerned about.  In the past few months, I have been finding that after lying down for a rest/sleep, My lower limbs start to become numb, with tingling sensations. It was confusing me, as having spent 30 years being a Registered Nurse, and not understanding why these symptoms were only appearing when lying down, and only in muscles, I knew it was not related to any other medical condition, However, I had not read re same symptoms in any other site on CFS/ME: now I am reassured;  what I do to stop the numbness/tingling (enabling me to rest/sleep) is wear some TubyGrip on legs and for some reason this assissts the muscles, and assists my sleep/rest.  (I also realize now that it is not just Restless Legs Syndrome, as some people thinl)..  Thankyou. 

Thankyou:  you are just confirming an isue that I was starting to become concerned about.  In the past few months, I have been finding that after lying down for a rest/sleep, My lower limbs start to become numb, with tingling sensations. It was confusing me, as having spent 30 years being a Registered Nurse, and not understanding why these symptoms were only appearing when lying down, and only in muscles, I knew it was not related to any other medical condition, However, I had not read re same symptoms in any other site on CFS/ME: now I am reassured;  what I do to stop the numbness/tingling (enabling me to rest/sleep) is wear some TubyGrip on legs and for some reason this assissts the muscles, and assists my sleep/rest.  (I also realize now that it is not just Restless Legs Syndrome, as some people thinl)..  Thankyou. I would also like to add , that yes, tha Difficulty of Swallowing is also one of my other symptoms that has started with this increase, (and I also note that it is worse/very bad, when the weather is extremely hot - I live in Queensland, Australia - and November here was in the 40 degrees and was my worst month ever for pain).....but when trying to swallow water, with tablets, I have to push against my Chychoid (in throat) to enable the tabs to go down.

Hi Littleme

Thankyou for this post it's proved very helpful.

Do you mind telling me how you are now?

I was diagnosed with M.E in 2012 and have just started having the symptoms you described, especially the pins and needles in hands and feet.

When I was diagnosed I wasnt offered an MRI scan.

I really hope it doesn't get worse. It's a surprise to get such new symptoms after so many years.

Thanks Peachy.

I have been told before that it is not Lupus - I've not heard of the other one. 

I am waiting on tests for B12 deficiency too.

i watched this the other day

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Patient Moderator Note: I have removed an URL (a link) from this reply as it was unsuitable for inclusion within these forums. If any user is interested in this removed information they should contact the author via the Private Messaging system requesting such. Thank you for your cooperation.

patient.info/forums/discuss/private-messages-226361

I just replied to you with a link but it says it was waiting to be moderated

Ok

i can type the link into youtube? maybe ask if you can be tested for Vit D and iron defficiency?

I have no idea why the link is not allowed - I found it very helpful and I found it on the UK MS website forum!

If you go to Youtube and type in diagnosing and treating Vitamin B12 deficiency you will find it. It is about an hour long if my (very bad) memory serves me  correctly!

Just an update following your reply to me about a month ago. Today I got blood tests back after having dental problems and they show signs of autoimmuned disease and I have now to be tested for Sjogrens as the dental professor thinks this is a real possibility. I remembered that you had mentioned this in the forum :-)

Thankyou:  you are just confirming an isue that I was starting to become concerned about.  In the past few months, I have been finding that after lying down for a rest/sleep, My lower limbs start to become numb, with tingling sensations. It was confusing me, as having spent 30 years being a Registered Nurse, and not understanding why these symptoms were only appearing when lying down, and only in muscles, I knew it was not related to any other medical condition, However, I had not read re same symptoms in any other site on CFS/ME: now I am reassured;  what I do to stop the numbness/tingling (enabling me to rest/sleep) is wear some TubyGrip on legs and for some reason this assissts the muscles, and assists my sleep/rest.  (I also realize now that it is not just Restless Legs Syndrome, as some people thinl)..  Thankyou. also the dental issues....I have been having what I thought was the onset of Gingivites in past month..and treated same with antibiotics and Special Mouthwash....HAVE NEVER HAD THIS BEFORE either, but thankyou, now know others with CFS/ME also have similar symptoms.....holy moly...we really are falling apart....the Loss of Balance, being Dropsy, Bad Memory, Muscle Pain, Tiredness,Tender Joints and the arthritic pain in same, even driving a car, exacerbates the pain, making us become housebound ....on and on...who can/is going to find us a cure..as I don't really want to live another 20 years like this..and especially as some don't understand what we try to tell them....sending us off to psychiatrists..