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Min 13 years, 7 months ago.
I have had Thalidomide and am now on Revlimid. I have neurophy on both feet which is manageable. Recently I have been getting "restless leg syndrome" accompanied by similar symptoms covering the whole body. It doesn't trouble me during the day but makes it very difficult to get off to sleep. Has anyone had any similar symptons@ I am assuming that it is connected with the Thalidomide/Revlimid regime.
Derek Debuse
Hi Derek,
Yes, I have had the same thing. I wasn't convinced at first that it was actually peripheral neuropathy and wondered if my leg numbness was caused by the same back pain that took me to my GP in the first place (leading to the eventual diagnosis of MM). However, I have had various scans and x-rays done and now accept that the leg and foot numbness is down to Thalidomide and chemo. Certainly the symptoms were at their worst while I was in hospital in March this year for my stem cell transplant, and I definitely recognise your description of annoying restlessness when trying to get to sleep.
It's much more manageable now, perhaps because of the amitriptylene and Zamadol prescribed by my GP. I have no problems sleeping any more and that in turn means less tossing and turning in bed and therefore less back pain.
The main issue I have now is simply standing still. After 5 or 10 minutes on my feet, the leg numbness starts to get really bothersome. Walking is much better – I can manage 45 minutes or so at quite a brisk pace.
I have read here that PN [b]can[/b] go away eventually but it can take around two years to do so (although it might not go away at all). I don't think it can be treated but it can certainly be masked with medication, so maybe a suggestion along those lines to your GBP or haematologist would be helpful.
Best wishes for a good recovery and as much "normality" as you can get back to.
Geoff
Hi Derek, I am on CTD (Day 21) of the first cycle and getting numbness and tingling in my spine especially when tryinng to sleep at night and extreme shakiness. I have reported it to the doctor and they say it can be one of the side effects but didnt advise if there was anything I can do to alleviate it. I will take Geoffs advice and ask the GP for some amitryplene and zamadol if it gets unbearable. I always thought periperal neuropathy was in your feet and hands too.
Peripheral neuropathy is generally in feet and hands. I haven't heard of it in the the spine or back. Mine is still mainly on feet, but at least I have not got the "restless legs" aby more. I have changed from Amitryptilline to Gabapentin. That may have had a good effect.
the neuropathy does not trouble me during the day, but gets worse during the evening. No pain, just a marked tingle and pins and needles.
It does make one walk in a rather plodding way.
Derek Debuse
I have had PN in both feet following Thalidomide (CDT) treatment, which finished around Feb 2010. I call it sponge foot because that is what it feels like. It does not bother me and I can live with it at the moment. I have been informed, by one of the many consultatants I have seen since diagnosis in July 2009, that it MAY go away but not to hold my breath.
Note for Derek: You do not have to upload a 'photo of yourself each time. click on your name and that will take you to your profile (I think that is what it is called) and you can upload a picture there, as I and others have done.
Kindest regards
David
Hi guys, I am new on this site today and have been reading some of your comments and I must say that you sound a lively lot!! I care for my husband who was diagnosed with MM in September, after 9 months of really bad pain which he was told was due to wear and tear and inflammation…… anyway, he gets extremely cold feet and tingling in his hands, which is supposed to be down to the Thalidomide he was on – his treatment consisted of Thalidomide, Dexamethasone and Cylophosphamide, which he started in October. He has responded really well and just after 3 and a half months of treatment is being considered for SCT. However, he has been and still is suffering from the most horrendous sweats – sometimes 4 times a day and sometimes as much as every hour or two..they are completely debilitating, as they soak right through his clothes and he has to change. After the sweat, he gets very cold. There is no temperature. First they put it down to the MM, but now that it is being controlled, they think it was a reaction to the MST he was taking, so they changed him over to Dxycodone Hydrochloride but still they continued. Has anyone else suffered from this type of sweating, or maybe know someone that has?
Best wishes
Chris B 🙂
Hi, ChrisB
Yes, I have had profuse sweats. Not for a while though and I wasn't able to identify what was causing it. It just comes on….unexpected and uninvited.
The PN is significant and I have it quite badly now. Not painful, but means that a stick is helpful to stop me overbalancing! It also causes those cold feet. Sometimes my feet and hands are like blocks of ice. Once again, it may go away but takes time.
Dreek Debuse
I believe the sweats are a side effect of the CDT treatment. I also had them when on CDT and just after CDT. One minute I would be sweating next freezing cold, my poor old wife suffered from me throwing off the duvet or alternatively had this Ice block trying to cuddle up! I think the cold spells were worse. At the time I ended up wearing long johns under my pyjamas with socks to go to bed to keep warm. Funny, I had forgotten about that episode, seems ages ago now. The good news is that basically that has now gone, although I still get very cold hands for some reason.
Kindest regards
David
Hi Chris,
I care for my husband too, I can identify totaly with the sweats, as my husband had it too, whilst on CDT. He responded well to CDT with little side effects apart from slight periferal neurapathy in his hands; he wa on mssive doses of mst too, as well as other drugs relating to his heart bypass.
We always thought the sweats were related to his poor kidney function, but they did go when he was responding well to the treatment.ie when he finished it. Changing bedding and pj's in the middle of the night was not pleasant. But at least it was not winter in our case! as he was diagnosed in August. I seem to remember he was taking those little sachets of salts and essential minerals as you lose so much of this when you sweat to much.
On the plus side he now has hot feet which he had not had for many years
Hope it stops soon for him.
Regards Min
Hey everyone – thanks for your replies. It is really horrendous, isnt it? And of course, our homes end up looking like Widow Twankys laundry!!!! Its strange as he has finished the CDT and has responded well to the treatment and is no longer on it, but is still having the sweats and his kidney function is fine, so maybe now they will diminish with time. I had to laugh Derek at your comments about long johns, as that is exactly what my husband is wearing – very chic! But if it helps, what the heck. And Derek, yes, the duvet throwing is down to a fine art now. I bought him a small table top fan, which has been a brilliant buy, as he puts it on as soon as he feels one coming and sometimes it will stop almost immediately.
Min – What sachets was your husband taking, as no-one has offered us anything, even though I did ask about replacing natural salts? So glad he has hot feet now!
My husband has recently had a metal pin put in his upper arm, as the Myeloma caused a large hole in it…he also has Myeloma in his ribs, and back, but we are hoping that they find him fit enough to have the SCT. Has anyone had a transplant and were you at the time and how much better are you now?
Kindest regards
ChrisB 🙂
Hi Chris,
they were simple re-hydration salts. I bought them as he was having such awful problems with leg cramps. He was on massive doses of frusomide at the time due to fluid retention.
Min
Hi Min
thanks for your reply. Did you buy the salts at a chemist? When I asked about re-hydrating my husband, I was just told that he didnt need anything – his body would make it up through diet etc….which of course I thought was absolute tosh – I went to a health shop and bought some coconut palm juice I think it was, and it was just horrid, so he wouldnt drink it. He too had been on high doses of furesomide due to fluuid retention – one night both he legs were swollen up to the thigh. We have cut it down now to 20 mg and hope to be down to 10 shortly. Has your husband had a stem cell transplant?
Chris x
Hi Chris
The rehydration salts were diarolite or boots own brand of them, Use twice as much water as recommended. Don't use them too frequently or often. But Peter was on 60 mg of frusamide twice daily
I was told by a friend that tins of 7up (lemonade) had all the salts you need for rehydration You can also make your own with 1 ltr water to 6tea spoons of sugar and half tea spoon of salt
His legs have been swollen since he started Revlamid, no understanding why. Some days are worse than others. He did have fluid retention up to his waist, when he was 1st diagnosed Half way thru the cdt course they were fine and have been for most of the time until lately.
He has had an SCT and he was fine for 5 months after it But one of his Drs said that as it was only 5 months it was classed as a failure.
I was told when asked that if you have had kidney failure such as Peters it will always be. Once the kidneys have been damaged by mm they cannot fully recover. Don't know how true that is. He is on a salt free diet as much as possible. . Not even the safe salt. Most people will manage to consume salt without knowing it. I used to read all the labels on everything looking at salt content and it is in milk so don't really need it in the rehydration.
Min
I am so sorry to hear that the treatment only last 5 months for your husband, Min. It is such a radical procedure to have done and then find it only lasted 5 months…..you both must have been devastated. How is he now? And, how are you? All this responsibility on you to get the diet right must be exhausting – as you say, salt is in absolutely everything.
Do you work, or are you able to devote all your time to your husband?
Chris X
My husband has had the sweats and the cold times but after reading everyone else's experiences. he has had nothing! He just got very mild symptoms where he felt hot but no tempreture and then got cold. First of all I used to wait for a cold or flu to start but now we know it is the drugs
Gill
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