Morning all! Well it is here (Germany), and a beautiful day it is😎.
I know some of you suffer with Neuropathy and just wondered what you do in the middle of the night when the burning (for me in knees and ankles) keeps you awake. The pain/burning is not so bad during the day, but ‘at night’ 😟😟😟.
It must be breathtakingly beautiful in your patch of the world!
The soles of my feet burn in the night and I find that slathering them with a plain base-line cream like E45 soothes them. I don’t know if this would work on your knees and ankles. There maybe something more effective that you can apply. I imagine that your pharmacies are pretty spot on.
It IS beautiful! We are soooo lucky! Can’t get depressed with everything around (growing,
screeching/quacking/twittering all day in front of the windows).😂
Have tried the cream you mention - it works for so many, but not for me!☹️
I have an appointment with a Neurologist next week so I hope she can help.
Hope life is getting a little easier for you now. You have certainly been through it the last few months. Take heart!
😎💐💥🍾🍸
Why not post over on the Lupus group and ask them - I know several have really bad neuropathy pain.
Gabapentin seems to be recommended as a treatment, but it seems to me the overall treatment is roughly the same as for PMR. Some hopes of a cure then!?!
Cure? I fear not. If the nerve damage is far enough advanced the nerves won't repair.
😢😢. Or if you can’t see those “tears”.
Sorry xxxx
Hi Constance
Mine is in my feet, l find standing up is helpful with a little walk around the bed, in the day it doesn’t seem so much of an issue!
Mine’s bearable in the day too. I do the same as you at night, I walk to the toilet - 3 times most nights!!! - just so that I move. Getting back to sleep is not too bad usually.😏😏
For months I had terrible burning itchy legs usually at night and worst at the back of the knees. I found that Aveeno products really helped to sooth the nasty sensations. I used (and still use) their baby gentle wash in the bath and shower and their adult moisturiser twice a day.
Thank you! Must admit I’ve never heard of “Aveeno” products. How I wish I could get into a nice, soothing bath. I might get into one but I couldn’t sit down.😂😂
I looked online and found that Aveeno products are available in Germany. This is one site that sells them:
caretobeauty.com/de/en/aveeno/
As for bathing, I also found Epsom salt baths very helpful. If you can't sit down, maybe you could soak your lower legs.
Hi Constance, well I am still alive and will be sending you an explanation of my change of name shortly. I can't sit down in the bath either because of my fractured spine. When Janet was alive we bought us a "bath aid" for her use and I've used it for past three years. I sit on outside the bath and slide my bum across the joining bridge so I can then return to a standing position and turn the shower on to do my hair and upper body. I sit for washing legs and feet. Though I've had one foot in a plastic boot in the shower since November 18, because I developed an ulcer on the end of my big toe.
I use Eurax for itching skin and I get a lot of that courtesy of Klinefelters. Hope you improve soon and will write shortly
Colin
Hi Colin! I wondered how you were getting along!
Are you able to get around OK. Spring has “sprung” here in Germany - hope it lasts. I feel so much better when the sun shines.
I’ve developed poly neuropothy since we were last in touch, damaged nerves, so I am stuck with it now. You are much worse off than me (as are others) so I certainly can’t grumble.
All the best. Constance. 💐🍾🍸
Dear Constance
Poly neuropothy sounds horrible, so I hope that you recover from it and soon. We do get some sun in Southern England but haven't seen much of it recently. When I read the posts each day I am glad that I am not as ill as some poor members. My Klinefelters is under control, as is the G C A and am down to 6 mg Pred. daily I've been on that for three months unusual because the ulcer on my foot was thought to be linked.
I went to the Acupuncturist this morning and he was please with the improving back pain, the flare of G C A , but he has started putting needles in my left hand as I have arthritis very badly in thumb, forefinger and would you believe my wedding ring finger. I've kept that in place because I still feel married to Janet.
I'm taking Nortriptyline for my depression and don't think that will ever do away.
Off to the Vascular Clinic tomorrow to find out what conclusions they have reached after the Ultrasound scan and the X-Ray. I'll keep you informed
Regards
Colin
Glad Janet is still “there” looking out for you. I don’t think anyone who had been happyly married would EVER take their ring off.
Good evening everyone..I have severe neuropathy in both lower legs and feet and across the back.of my shoulders. It's burning or spiking pain stiffness and weakness. I have diabetes and currently on 6mg pred. Eventually Dr agreed to let me try 60mg duloxetine. I gave up the amitriptyline and ecitalopram. I was very tough mentally and physically for a few weeks but at least I can was feet in the shower without screaming as much when water hits my legs. I can feel it creeping back so will try the max dose of 120 (see Dr in the morning).I have been using the 15p bars of soap at the bottom of the bed and it seems to help. Not saying all stops but better. Hope this helps. 🌻
Good morning Constance13 and everyone, I don’t know if this is helpful to you but I have suffered with this for a few years. In bed I use a bed frame which makes a little tent over my legs to stop the covers from touching me, it helps keep my legs and feet cooler and so doesn’t aggravate them as much. Come the warmer weather, after tea/dinner I sit with an electric fan aimed at my legs, I find this a good distraction. I’ve tried Gabapentin and Pregablin but have a dreadful history with side effects of medication. Take care xx
Thankyou Mgt! Strangely enough the burning is not on the top of my knees and feet, it’s inside (like under the kneecap, inside the ankle). Many people seem to be affected by ‘outside’ pain (if you see what I mean).😀
I find ‘covering’ the areas helps. I tuck myself up in the duvet. My balance is suffering and I have been warned never to go out of the house without my walker.
I have an appointment with the Neurologist next week but I fear he will suggest those two medicines and I really can’t stomach more tablets (literally)!
I take a paracetamol at night for aching legs or knee pain.
Still Working on reducing Working!! Fantasy!
Got heartburn on 60 mg prednisone
Brown small patches to scalp
