Any UK based Peripheral Neuropathy sufferers out there?
Posted , 39 users are following.
I'm slowly getting worse and worse. My pain is worse than it has ever been. My weakness is worse than ever. I've exhausted all treatments and don't know what to do next. Other than waiting to see the Neurologist in the hope of getting some miracle drug he knows about that know one else does, I have no idea if I need to just get used to it because this is how every day is now going to be forever. I've taken no time off work, yet I'm suffering all day and fear I'm either going to lose my job or work myself into a grave. I'm so down and just feel sick of the pain and sick of feeling a fraction of the person I was 3 years ago.
10 likes, 66 replies
joh13240 BigG101
Posted
kenny_02267 BigG101
Edited
I started suddenly back in early December having problems with aching feet after walking, and some tingling in some of my fingertips. I have lived in the U.S. my entire life and retired with the Fire Service after 31 years at age 55. I am now 60 and always stayed in pretty decent shape since my 20s.
Since the onset of this horror that I also experience, I find myself just surviving.
I totally understand the not wearing shoes thing. I wore a pair of cowboy boots about 6 weeks ago and felt like someone had torched both feet.
I started out trying a Chiropractor first, and after several xrays, I did have a pinched nerve at the base of the spine, but My C1 in my neck was badly offbalance due to a bad crick I suffered last May, leaving my Atlas offset.
When you read about the C1, it is in such a fragile area, and apparently the nerves that come from the brain pass right through, and if pinched, can cause multiple problems.
At first I was excited about the possibility that Chiropractic care may solve my issues, but after a month, they only seem to be the same and many days worse.
I also went to my Cardioligist, thinking that maybe my heart was causing all this misery, but everything checked out great.
I would love to ask other sufferers on here a question. First, other than this almost indescribable Neurapathy pain, burning, tingling, shooting pains in toes and fingers and sometimes in forearms and elbows, I basically feel normal, I feel good, I have a great appetite, my color seems normal. In some odd way, that's what makes the Neurapathy aggravation a total depressing nightmare. Quiet frankly, you never know what your going to get from day to day, but for sure not much relief.
One person thought when their bladder or intestines are full, the Neurapathy bothers them more. I think the same thing, but thought maybe it was just me.
I have only wore slip on Crocks for 2 months now while being out of the house. So far I'm only taking over the counter meds when some days the pains unbearable, but it barely makes a difference.
Also as someone says, you have to learn to control your mind , because some days I just want to give up, and if you have never experienced constant nerve pain, then you surely can't relate.
My family has even suggested that this could just be my nerves, stress related, that it's possibly psychosomatic illness, lol.
I almost feel like a medical professional now, because I have read hundreds of articles and books on the subject, but to read first hand accounts hits closer to home with me.
I pray that someday I will wake up and this will end, but once it consumes you, it feels like a permanent thing.
I just wander does everyone on here basically feel physically healthy and normal except for this Neurapathy nightmare.
Of course the Neurapathy is more than enough for anyone to endure.
I personally feel for all of you on here that's fighting this battle, and certainly appreciate every bit of info on how you cope with it and what you take to give you some relief. Everyone's system is somewhat different, but all info helps. Thank you so much!!!
Enna1 kenny_02267
Posted
This was me and i have an appointment in 10 days with a dr in the hospital, the question is on my list.....
Someone said water and a hand of peanuts on Spine Health website which I think is an excellent site. So I went to get some peanuts today. Well, living in spain, peanuts, or any nuts, you can't get plain nuts. Today I saw them in yogart, salt, chocolate - so I got them with salt. I think the bloke is having us on, but if you look at their website you will see the comment. I fully agree with water, but forget. My life is so busy here in Spain I usually do something or other, then it gets to 5ish and because I am up and down during the night going to the loo, I don't drink water after that time. Plus, Tramadol can give you constipation. Then I read somewhere you should drink 3 litres of water. I thought have a heart, it takes all my strength to drink 1 (but i do drink a coffee/tea as well) . People will tell you all sorts of things and what works for someone may not work for you. Personally, I am like you, I am ok most of the time, and if you read my message above, I am not beyond walking for 4 hours, although I am in terrible pain, it just depends what I want to do.
With regard to your comments about almost being a professional, I bet you do know more about pain than a normal doctor. Some doctors know nothing about pain, spines etc. as I discovered when I went to a dr/drs in England. My osteopath knew what he was doing, booked me into a hospital for MRI/X Rays. These drs knew hardly anything and the stronger the drugs, the more I got annoyed and in the end refused to take them. I was really glad to be in Spain, the doctors here have been so good to me. They have all come up with the same diagnosis so I am thankful for that.
Am I normal, no. Since I started taking medication I have put on a lot of weight and Monday I go on another diet. Just laughing, you ask what, water. No kidding.
My mother was just the same, and my daughter is the same. So something in my genes must be the same. However, my mother was a supervistor in a kids school and used to lift heavy pans (which now you wouldn't be allowed to do) and I think that was her downfall, my daughter - fell off a mountain bike, me - oh I fell down the stairs.on the vase of my spine, so I think we have been unfortunate and whether our spines would have been any better without all these actions I don't know. Do you know whether you have been a (I was going to say naughty boy but better hadn't) victim of something like this?
We did a massive marathon yesterday, and this morning expected to feel the aftermath - sitting having our picnic - I think we did 7 hours off and on in the car. OK I was a bit sore, and as I got into bed I wished I had had a hot water bottle, but wasn't so bad this morning. I now take my pills in bed, do some exercises - in bed - and then get up. Usually OK.
I don't think I told anyone that 2 weeks ago I was so much in pain, my partner and I sat in the park in Valencia. Whether it was there or in the taxi back to the car park I forgot my handbag. It was obviously stolen as we went back and to the cop shop where taxi drivers are supposed to take lost property. Nothing much in there except 60 quid. So now I don't take a handbag with me at all.
It affects us all as you say, and we will try anything. There is a new treatment in Valencia and I am not sure whether I am going - no I don't think I will.... they shut you into a tunnel. I have tried to cancel my appointment - no name of drs and can't get hold of the web site, Its called Hyperbaric Oxygen Treatment..... Anyone had it and has it worked. I have a feeling that they want volunteers and then after the first treatment its private......
Kenny it was very refreshing to read your message on this website - we are all in it together and I feel there is no treatment. I already know someone who has had ablation (see ADRSupportUK) and it didn't work. I must email him to see what his last treatment was. There are forums on the internet, I am not sure that this is the best..... but anyway, good to hear from you.
kenny_02267 Enna1
Edited
I just now take life one day at a time. All those years I just had general aches and pains, wow, I now realize that those were nothing. A person should never take life for granite. I basically woke up one morning and realized that something was different than any feeling I had ever had, and the weird symptoms somehow felt permanent.
I guess one of the worst things for me, I now have read so many things , I stay confused from week to week.
I also realize that after 60 years that the quality of life is the most important thing, in which now for me is slowly becoming a distant memory.
I wake each day hoping that this continuous bout with burning, tingling and pain will somehow miraculously improve.
I truly have discovered that the circle of people that you can speak to about
This problem is very small.
Thanks again Enna, I wish you well!!!
Enna1 kenny_02267
Posted
The surgeon told me it was dangerous to operate but has left the door open ( plus he was having a terrible day) so I am seeing how I go at the pain clinic. Our hospital has changed a big new one new staff etc. I walked out of the pain clinic last time I was there in disgust but we will see next week. I ave just about had every thing hat the uknis capable of if there is a decent syrgeion the
Enna1
Posted
And replacing discs I think has stopped in some areas of the uk. Here in Spain I don't know. You never see anything on the internet about any surgeon. I am quite staggered about second opinions too, even private v state systems.
Try the lyrica/gabapentin/pregabalin and let us know how you get on
Take it from me I have tried most things but ( you
Claire2312 BigG101
Edited
I have had no success as well. I have exhausted everything. My neurologists only answer now is narcotics and I wont do it. I am still working and in pain everyday. Let me know if you find that
miricle.
BigG101 Claire2312
Edited
Thanks for your message. Makes it a little easier to know that someone out there understands what you are going through. Still no change at my end. Lots more tried but know success.
Grant xx
Jmac2 BigG101
Posted
kenny_02267 Jmac2
Posted
I have aches, and shooting pains, sometimes cold shooting pains which feels very weird. My feet on the bottoms after a brief walk feels like the bottoms are being shocked, plus some days my feet are ice cold.
The part you say about people thinking your nuts. My family all thinks it is all in my mind. They tell me to quit constantly thinking about it.
I am a 60 year old male that never in my wildest dreams thought that something like this would do me in. I told my wife that I would feel alot better if my legs were removed from the knees down.
I have tried am still going to a Chiropractor, and it seems worse since I've been seeing him.
I've always loved the outdoors and now everything seems to be a huge task, and my patience is almost non existent.
Well, maybe some miracle will happen some day.
joh13240 Jmac2
Posted
lindagkelly joh13240
Posted
joh13240 lindagkelly
Posted
valium is the same class of drug and is just additive as Knonlipin. Xanax is also in the same class of drug and it is extreamly hard to get off of due to it's longer acting effects( half life is the term Drs. use)
lindagkelly kenny_02267
Posted
joh13240 BigG101
Posted
I found just by chance that wearing pure wool socks all the time helps. something about the ichyness of wool somewhat levels out the pain, burning, etc. it really seems to help at night when things are worse.
lindagkelly joh13240
Posted
joh13240 lindagkelly
Posted
here is a partical quote from one of the articles:
Prevention of heat loss, thermal insulation and heat treatment play an important role in physiotherapy. For example, peripheral vascular disease associated with metabolic diseases (e.g., diabetes, arteriosclerosis), arthritis, paresis and paralysis of peripheral nerves all require interventions involving heat therapy. Wool products such as garment linings, shoulder-straps, knee pads and lumber pads exert a very positive effect on the above mentioned circulatory disturbances. Moreover, due to its unique physical and chemical properties, knitwear increases the pain threshold and reduces muscle tension; knitwear can be used both before and after exercise to prolong the therapeutic effect. Physiotherapy sessions for little children on wool mattresses also evoke additional sensory impulses thus improving sensorimotor outcomes. Extending the heat effect on the skin resulting from physical procedures such as massage, heat therapy and ultrasounds is regarded as one of the main theraputic advantages. Last but not least, there are also some easily perceivable economic benefits.
In addition, the influence of wool beddings on sleep patterns (associated with thermoisolation and thermoregulation) will be discussed as well as their regenerative effects in patients with somatic disease and depressive disorders.
lindagkelly joh13240
Posted
Enna1 joh13240
Posted
You talk about vascular disease do you mean the purple markings like bruising on your feet etc. I go to the hospital for this and that and I say about these purple marks on my ankles and legs and they say oh its OK. I read that these markings are vascular but are they and how to get rid of them....
They look awful and do look like bruising and wearing sandlesmy feet look stupid. I wondered whether it was something to do with. The many drugs I take !!!