October 5, 2018 at 1:51 pm
agreed, lets face it, you are putting fluid into your body that it does not want… and has to spend time and effort getting it out… if you are weak already, I don’t suppose this helps… but feeling so down after 1 pint?… what next 🙁October 4, 2018 at 4:20 pm
Thats interesting, thanks for your post… it’s like it just makes me tired and my muscles washed out?.. looks like you are the same… Not that I miss beer that much, but why would it be a CIDP thing.. is it the alcohol that gets in your blood stream and makes everything weak?…September 29, 2018 at 2:44 am
Yes, thanks for that… I have 3 things left to do
Spinal tap, brain scan and nerve biopsy… think these are the only things not done to date… I’ve talked with the the doc on these, but as Neuro say its nothing related to this, he’s not interested… will have to keep pushing..
Sat here now, mid back burning, lower back dull ache and weak… lets see how the day goes … got to keep smilling 🙂September 26, 2018 at 1:46 pm
Would anyone else have any thoughts on this?.. if it could be CIPD.. or know of anything more fitting?… many thanks… JohnSeptember 19, 2018 at 4:29 pm
Thanks Jim.. took a look at your profile last night… so I now see what happened to you … Wow, I can’t imagine what you went through!! I wish you the best on your recovery and thank you once again for your help here.. I will indeed read and take this info with me when I see the doctor next week…
Sincerely.. JohnSeptember 18, 2018 at 4:15 pm
Hi Jim.. how are you now… hope you’ve recovered some as these types of things go, at least there is some potential with recovery?… hope you’re doing well!
And many thanks for the advice.. I’ve been told twice now that there are no neurological conditions that can start in your core.. so I just need to do more exercise!!
Bearing in mind I’ve been going to the gym for 10 years 3 times a week to stop me aching… I’m not sure more exercise is possible…
But I’m at a point now, where the more I do, the worst it gets.. or so it feels that way.
It’s been in my front for a year or two, gradually getting worst.. I’m sure I could feel my diaphragm become weak, my breathing and throat tight, some hot pain mid spine and then my back started clicking and crunching… sometimes it won’t as it just feels tight, other times I can crack it for fun.. but then a bit of a step change as I felt it going up and down my back… it’s got as far as in-between my shoulder blades, and down as far as my backside, but at the bottom of the back, it’s like inside and I can’t stand too long now as it hurts like a cramp feeling… even walking is starting to be a problem… also mid back, its moved away from both sides of the spine, to the bigger muscles both sides… so even gym work I’ve done for years hurts after now? Also sitting.. the two bones at the top of your legs in the bottom kind of hurt as the dig into the seat??
Hands and arms feel heavy and working at let’s say 85%.. legs also heavy… but if I go to the gym, I can kind of push through it or at least still I stop… breathing can be hard also…
Also, the amount of effort required, it’s like my muscles a seizing up.. start off to the garden for a day’s work.. 30 mins in I’m kind of out of breath or tired, and needing a rest.. can also sleep for fun?
One big thing I noticed is it comes and goes… like it cycles a bit but is progressively getting worst.
I did describe it to the doc’s once over like a gang of bugs in my muscles making them stiff.. every so often they would move on to the next set, easing where they had been, but leaving it 10% depleted… Think the doc’s think I’m mad LOL…
Does any of this sound like the problems you or other have with this disease?… also, mild tingling, numbness at times… just on my finger ends, feet or face… but I’ve put this down to anxiety?, limited concentration, don’t enjoy my hobbies and more, thinking, fog, memory etc.. all not what they used to be… slight head ache AM at the back of my skull where it joins the spine… always better in a morning and things get tired out as the day goes on… that said, with back ache, sit for a while and I’m off again?
Sorry to put so much, but I’m kind of relived to find someone in a similar position. Not that I’d wish this on anyone and hope you can get some recovery from it! But I was just being told that this does not happen.. but for sure it’s happening to me and I’m not going daft.
As I say, sorry for going on, and you may read this and say it’s nothing like you experience, but it is something I think I need to suggest to the doc’s and see if they agree? May be get them to do a tap as everything else they have done shows nothing… but there again, I’m going weak in my core.. so why push and pull my arms and legs!!
Thanks for your time Jim.. much appreciated… JohnSeptember 17, 2018 at 4:41 pm
Thanks Jim for your reply.. you see, it says it in the first few lines… ‘weakness in arms and legs’
Where as mine started with a weakness in the core (Abs) and has moved through my middle into my back… all the time I’ve had the fealing of weak arms and legs, but not the prime issue… I’m wondering if these nerves are just in the arms and legs, or are they in your core also.. so could it be possable to start in your middle?… I have no idea.. problem is, neither do the doc’s?…
I’ve been forwarded the helpline number in the UK so may give them a call AM and just have a chat…
Strange thing these types of issue.. and everywhere you read its saying its not understood!… I’ll make the call… wish you all well and thanks again for your input… 🙂