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I have unstable BP and HR. It's very unpredictable when or why it happens in me. I also have severe neuropathy affecting my entire body.

Mine is worse when I am not relaxed. Sort of underlying buzzing all over. One of the weirdest sensations I get is the feeling that someone has sat down on my bed as I am lying there. I also found this happening when I was in hospital and mentioned it to the doctors. The nerves send out weird feelings. I often get the sense that cold water is trickling down my back and butt! I also feel like I have still got my glasses on an hour or so after removing them. The most unpleasant sensations, apart from whole body prickling, freezing and burning, is the feeling that I am wearing a very tight corset. I don't get it so much now as again it was linked to my large bowel filling up.

Thanks so much. All went well, a lovely team in the Pain Management unit. The dose is 4mls per kilo of your weight in saline solution. Canula into back of hand. Heart and BP monitored throughout. I felt a little woozy, but not very sick. My speech was slightly slurred like I'd had a few strong drinks. It lasted about an hour and I had some food and a drink and a cab home. I went to sleep for five hours after I got home and was a little bit achey, but I feel OK. Second session next week and one after that. Success rate is about 50-60% and if it works you have this done every three weeks.

I tend to sit on floors rather than squatting and get up very slowly. Sometimes it's hard to get up!

Yes they remove for freezing and are inserted into pockets.

Everything really settles down for me when I lie down and I feel so much better. BUT when I fall asleep all kinds of weird stuff kicks off.

I am about to start tomorrow three sessions of lignocaine infusions for neuropathic pain. I am a little apprehensive and I worry about the tachycardia, although I will be monitored throughout the session. This is being done as I am now at the maximum level with the Gabapentin and I cannot have morphine-one-related meds. Fingers crossed. I will update although no benefit is usually felt after the first IV.

Yes keep your brain active without overstimulating it.

Yes my whole body buzzes and it used to freak me out. Now I can switch it off by telling myself to relax and it kind of stops.

It's blooming brilliant. I roasted every summer and then I found a lady with MS selling them on eBay UK. It has been great and I have it primed and ready for this summer. It really cooled down my core temperature and made the heat more bearable. The lady who sold it to me is now a very good Facebook and e-mail buddy. The vest I have is made of heavy-duty fabric like the sort they make airbeds from. Flimsy or thin fabric would make the ice packs freeze your skin. It has to be really like like a canvas. The inserts are basically thick plastic filled with water. I think my vest was around £40+ and well worth it as I should have it for years. There are pockets front and back.

I had some symptoms of autonomic dysfunction years ago with ME in 1984 and then in 2007 the neuropathy spread up mu body from my toes legs, hands, arms and into my torso and finally my head. The neurostim is calming the areas down as there are three dedicated settings for pain (TENS), inflammation and healing.

I have read that the biggest risk with POTS is respiratory or heart failure. I worry sometimes about the prospect of this and that is why like many people on this forum I am doing all I can to live as healthily as I can and this means dietary changes and supplementation, some regular movement/light exercise and meditation/relaxation. I am also using a neurostim to help with nerve healing.

Tips are NOT to bend forward or down as it will make you feel ill. Also don't raise your hands above you head this can also make you feel weak and dizzy.

I get pooling in feet, hands, belly, upper arms and even my boobs! I guess the damage to the nerve fibres of the extremities causes the blood to gorge and pool there. The heat is from the inflammation and blood changes. It will get worse as the day goes by. Elevating the feet/legs onto a large beanbag helps me. I sometimes use freezing gel or neurogen to help. I am now using a neurostim and that helps with the pain and inflammation.

I have a cooling vest and it's wonderful. I also dip my feet in cool water when the heat really hits.

I've read many articles that say that the autonomic issues precede the anxiety. I strongly believe this as the nervous system responds so much to stress etc.

Most diabetics with neuropathy get intense burning in the legs or feet at night when lying down. This can be true of many people who get neuopathy. When mine first started it wad worse when lying down, but now it eases at night when prone. Not sure why.

I'm getting more restricted breathing and recent tests showed reduced lung capacity. I get very out if breath even doing minor things. Along with tachycardia it's quite unpleasant. Not sure what's best to do to improve it.

I've had a wheelchair since 1983 because of ME/CFS. I used it a lot until the late 1990's when family or friends took me out. I had to be pushed because of arm weakness. I haven't used it for years but if my walking worsens further I may use it again.

I've had cramps since 1984. Mainly when I've walked too much. I find magnesium helps and I spray my calves and feet with magnesium mineral spray or have a bath in Epsom Salts. Both work well.

I hope they settle down for you very soon.

Thanks, Micheller, I have found some suitable for my bed. I hope to raise it a fair way!

I think you are right. When your life style has been pared down you do appreciate the little things that 'normal' people take for granted.

Well yes, you may not actually be fully stressed or anxious in the normal sense but our nervous systems aren't functioning normally and therefore everyday life can impact strongly and reactions are greater.

I've just read about a lady on Facebook who has all of the issues we have and she mentions 'I had Myoclonus since June 2007 made worse by fatigue & stress', it seems that it's all relative. That's when mine started, too. I'm not surprised in a way as many people with conditions related to the nervous system have either tremors or jerking. The doctor who advises me with the neuropathy says being calm is so beneficial as all symptoms worsen when we get stressed, tired and anxious. It's like an overload to our bodies and the nerves become agitated and we may experience more damage to them. Meditation is so good and if you can do it for 20 minutes to an hour a day it does help. People think your mind goes blank when you do it and that's far from true; the trick is to let thoughts enter the head but not concentrate on then let them drift in and out like clouds. Stay in the moment and concentrate on your breathing and that focuses the mind. I feel very chilled and relaxed when I've done even ten minutes.