One of the worst times for my CIDP tends to be at night when I'm trying to fall or stay asleep. I don't want to take more gabapentin so I'm looking into other ways to reduce the prickly and stinging, and sometimes sharp, pains and aches. Any suggestions? I know it's ten times worse when my skin is dry and I've just showered so I try to put on lotion and essential oils. Especially helichrysum. I'd really appreciate input, even if it is just that you increase your meds!
Hi Rachel, I used to get those leg cramps a lot, now it's just occasionally. I don't know if its the meds I'm taking, or something else. I am being weaned off of Prednisone, so it's 20mg one day and 0mg the next. I started and was on for quite a while, 40mg per day. I also started with IVIg, but that had to be discontinued, because it made my Pulmonary Fibrosis worse. Then they put me on IMMURAN, LONG STORY YOU CAN READ ON MY PAGE, now I'm on CellCept.
Prior to the Dx of CIDP, I used to drink a glass of milk with a banana before bed, an that seemed to help. If it didn't, I'd do some deep knee bends, which also seemed to help. i can't do the knee bends now, bec ause once I go down, I CAN'T come back up.
Good Luck & God Bless, Henry
Sorry - all I can do is sympathize because I get this occasionally (often) as well - day or night. Onset of pain for no apparent reason and then it goes away for no apparent reason. Real or phantom? I do not know.
Sometimes I am certain the "go-away" is purely a mental thing - I get to a point where I THINK I should take paracetamol (which occasionally helps but I prefer not to actually take because there lies dependance) and the pain does a disappearance trick (certainly not always). Did it go away because it had run its course or did I "think" it away? I have no idea, but now I always seriously think about a pain killer because that can not hurt - and might just occasionally work.
Hey, my partner gets pain and swelling in his feet/ankles and I noiticed that once or twice a week a foot sauna would help with the pain. It never stopped it completely, he’s now back in hospital and with not having the foot saunas I’ve noticed he’s getting more pain again, it may not prevent it and its not medication but thought this may help? He’s being given steriods and is on morphine (due to old knee injuries) so they’re being weary at what other things he can have, hope you can get something to get rid of the pain.
Hi Rachel, I attend a pain clinic and was given two tablets that cleared the night time problem.
Trepilyne and an anti Migraine tablet. Must confess it cleared it away. Good luck and stay strong.
It's my 4th month and down to 10mg/day from 45mg of prednisone. From a wheel chair and now using a cane is quite an improvement however I stilI get pain on my buttocks (while sitting for quite some time), back of my thighs and legs. tingling and sandy sensation on my soles. Joint pains when I flex my foot while going down the stairs and feeling of cramps and swelling (edema) from legs down to my foot not to mention coldness. For me it's quite manageable maybe because I got used to it. Usually it wakes me in the wee hours of the morning. Anyway my neuro gave me Rivotril and later on Lexotan. It helps me relax and sleep but I seldom take it because it gives me hangover in the morning and I don't want to be dependent on it. Dipping in warm water in about half an hour and then massage helps a lot. Wearing knee-high thick socks warms my legs and helps me get through till morning. As a personal choice I consume veggie salads and sometimes pastries with olive oil or butter infused with cannabis during or after dinner. Like cancer and multi-sclerosis patients, it helps counter inflammation of the nerves. It does relaxes my body and helps me sleep. IMO it is a better alternative to the pharmaceutical drugs.
Hi Rachael, I'm lucky that I do not take meds, just IVIG. Have horrible leg cramps mainly at night. Get up and drink a few big glasses of water. They are getting fewer and fewer along with less tingling, shocks and weird sensations. In year four of IVIG, going into second year of B-12 weekly shots and accupuncture. I'm feeling better than I ever have since getting CIDP. Hope you find what works for you. We all approach it differently. I just never took meds because I don't like how it makes me feel. Take care.
I have very similar symptoms to a lot of those mentioned above. It is not really pain but severe cramps, strange muscle sensations and a lot of twitching and jumping. This only really happens at night when asleep or should I say trying to sleep. It definitely happens when I am especially tired or stressed or when I have flown on an aeroplane that day. Some solutions seem to be:
1. Have a warm bath before going to bed to relax the muscles (and you)
2. Drink chamomile tea before going to bed
3. Make sure your bed is long enough. I am tall and if my feet fall over the bottom edge it is much worse.
4. I take magnesium which seems to help with the cramps (although not proven)
I have not tried any medicine yet but I am sure a mild tranquiliser would help as well.
All the best
Glen
I had problems with cramps (mostly leg, but also occasionally other places). My doctor prescribed something called Requip. It takes about 2-3 weeks to really kick in, but since than has just about eliminated the cramps. I understand it is usually prescribed for restless leg syndrome, but it sure worked on my cramps. I got the generic form, and the price was very reasonable.
Early on in my CIDP, I had aches in my lower legs and feet (very different than the cramps - I described it as feeling like a toothache in my leg). Nothing worked on that pain. Fortunately, since taking the IVIG, this pain is mostly gone, just a low-level dull ache that I can pretty much ignore.
Hi Rachel,
Wow! There sure seems to be a lot of us who suffer from the leg and feet pain @ night. I wasn't able to sleep much last night for that very reason. I know water helps with the effectiveness of IVIG, but it hasn't helped me with the leg and feet pain. Some of the precursors to the pain have been too much physical activity during the day& stress. I am trying to minimize both, but it isn't always possible. I take 600mg of vicodin and gabapentin at night, but even that doesn't eliminate the pain. Getting out of bed and stretching and elevating my leg helps. Sometimes I finally resort to watching a NCIS repeat that I now know the dialog by heart and this lulls me to sleep. We all need answers, I hope one is out there. Peace
For myself, I've had it mainly in my right leg from my butt to my ankle and I found Lorazepam .5mg. can do wonders if nothing else works. I also have arthritis in both hands so I'm not sure if it's arthritis or my CIDP, but it's worth a try. Gary
hi, just wanted to add a comment. I use a cream I was able to get thru prescription from my orthodepdist. It is called Volarten and does wonders for my pain issues while sleeping. This medication goes deep into the tissues of the body and works there. Also I take 4mg. of zanaflex each night. This is a muscle relaxer and also helps with the pain. Also helps you drift off to sleep. Best of luck.
pam
I am so moved and inspired by the numerous from everyone! Thank you so much. Just knowing I'm not alone helps it to hurt less, at least emotionally!! I'm going to look into some of these options. Again, thank you so much and I wish you all the best! Much love!!
Shall I say "I feel your pain!" Rachel I tried everything and the only thing that helped me is Amatriptyline 25 mg... helps me sleep too. Keep searching !
I wrote a long detailed response and sent it to cyberspace. I had restless leg syndrome prior to CIDP. My case manager suggested Mirapex for the leg pain (.125). It is for Parkinson’s but is effective for restless leg syndrome. Main effect is minor hand tremors the next day but worth it to be able to sleep. I also take Restoril at night and also take Vimpat which is a brand new drug specifically for nerve endings. It is very expensive and I talked to pharmisist about a possible substitution. Was told it is very new and specific and nothing else is out there. I went 2.5 days without it and had to get it refilled. It was making more difference than I realized. Work has been very stressful this past week and my IVIG just taken on Monday has not been as effective as it has been in the past year (since Oct of 2011). Yes, I am taking more drugs than I am comfortable with, but I have gone from confinement in a wheelchair to walker to now just using a cane from time to time.
Rachel, I too have problems with my legs and feet especially at night. I take Gabapentin but didn’t want to keep upping my dose. I supplemented it with Oxycodone (it relieved pain short term) but I didn’t like the highs and lows associated with it. My Neuro started me on Tramadol. Also, a pain reliever. It has relieved much of the pain without making me feel out of it. It’s not perfect but I feel a lot better with this combination. Mary B
Hello and yes I understand - ... A. i tried magnesium : had some relief; B. my naturopath suggested bicycle movements - one leg at a time : it was good, but I was half asleep and would fall to sleep only to be woken to repeat again and again and .... ; C. drinking a glass of tonic water ( quinine ) an hour before bed - its been the most successful so far, i probably drink 2 glasses now D. Warm bath before bed. ( I put both oil and salt into the water ) And dry skin, I've started using oil directly onto my skin ( after bathing ) and I feel taking the vitamin Spirulina has also helped my skin and hair.
Hope some of this helps you - stay strong and hopeful Janie
I recently got a hot tub and I sit in it for about 30 mintues before I go to bed. It does wonders to relax my muscles and relax my whole body. I live in MN and we have the hot tub outside. I have sat in it every night even when the temperature is 0. I thought it would be too cold to be outside in a hot tub but it isn't. It is really peaceful to be out there at night in the snow. I keep it pretty hot, around 105 -106. When i slip in I can feel all the pain melting away in my legs and I feel so much more relaxed when going to bed. I also find when I have time I love to sit in it in the wee hours of the morning. I can't sit in it on work mornings (I work long, 10 hour days and get up way too early). But on the weekends, I slip in before anyone is up at my house and sip my coffee. It really helps with all the aches I wake up with. I usually am so achy and sore in the morning that I move really slow. The hot tub was a great investment and I admit, it also helps with stress too.
I was getting jealous of you, hearing of the wonderful experiences, until I read of your 10 hour work days. You deserve a hot ub and so much more. Peace Nancy
chirpybirdy said:
I recently got a hot tub and I sit in it for about 30 mintues before I go to bed. It does wonders to relax my muscles and relax my whole body. I live in MN and we have the hot tub outside. I have sat in it every night even when the temperature is 0. I thought it would be too cold to be outside in a hot tub but it isn't. It is really peaceful to be out there at night in the snow. I keep it pretty hot, around 105 -106. When i slip in I can feel all the pain melting away in my legs and I feel so much more relaxed when going to bed. I also find when I have time I love to sit in it in the wee hours of the morning. I can't sit in it on work mornings (I work long, 10 hour days and get up way too early). But on the weekends, I slip in before anyone is up at my house and sip my coffee. It really helps with all the aches I wake up with. I usually am so achy and sore in the morning that I move really slow. The hot tub was a great investment and I admit, it also helps with stress too.
And one more thought .... a light covering at night - so a Goose Down Duvet - i think mine is 80% goose / its light (500grams for Queen size ) and very warm - no pressure on my legs ... nerves ... I also use an Alpaca 80% throw ... light and warm on very cold nights.