Hi Mandy, Just been reading your post, My husband is the one with MM, hes now post stem cell transplant of 15 months., but not in remission,….some of the drugs you have listed can also cause bone pain, and this includes the bone strengthener you get 4 weekly,this drug can also make you feel better, but its different for everyone, my husband experiances this pain after having the strengthening injection,ask the hospital if they can administer the bone strengther over a longer period then 15 mins…this seems to help, also keep hydrated before having that injection and after, speak to your consaltant about calcium with vitamin d also. My husband takes a different morphine to you, perhaps try changing the brand? as different brands are absorbed differently through the gut, for his pain relief he used initially tramadol with his morphine, and progabalin instead of gabapentin , if that the way you spell it, this progabalin acts quicker to relief the pain in feet and hands. He weined him self of the morphine high dose and also the tramadol., he now doesnt use tramadol, time became the healer!he was feeling similar to you for upto about 10 months after stem cell, we put it down to the growing pains!!! it does wear off a bit, speak with your pain manager, to try and get you better relief from the drugs…..good luck, and keep positive, you can do it! also get a very good mattress one of those which fits around your body, perhaps you may get this on the nhs, dependant upon circumstances, ask your spinal surgeon about a boston brace, we did a lot of research on drugs and side effects so to help my husband what was happening to him, this help him cope by understanding….hope this helps,
Hi, this is quite a late reply however it may be useful for some.
With regards to the calapsed vertabra, my husband had numerous callapsed vertabrae in his back, he has had 3 operation khroplasty? traeting a couple vertabra at a time, IT GAVE HIM INSTANT RELIEF!
We wished that we had gone for the operation sooner, as waiting just made him worse and the vertabrae calapsed.
To relieve the pain in the rib cage, you can have something made called a BOSTON BRACE,
My husbands back surgeon insisted that if my husband went ahead with the ops, then he should wear this brace as much as possible after, the purpose is to give you support aound your middle, its a rigged brace made to measure, my husband swears by it.
At first he was upset, when he saw it, however the relief he gets soon got him over that. He wears it at night time after work and at the weekend, even though he is not in total remission, has had the 3 back operations and has neoropathy he still manages to work, he says it takes his mind of it.
The boston brace is great, because your vertabrae have callapsed, this is why the ribs hurt, as they rub together, and you cant support yourself, the brace helps you support your self and keeps your posture, to its best, and helps to prevent you bending over further.. ask your consaltant about one, there worth it.And remember to try and keep a good posture..hope this helps
My husband has had the cement in the vertabra procedure, on 6 vertabraes, because he waited too long they just calapsed….we wish it could be done earlier, we were being told that the stem cell transplant would make it better but it didnt it just got worse, the procedures have made such a differance and my husband s back looks straighter, he has to use a back brace called a boston brace now, to help the spine not get wose and help keep him upright, it helps with the pain, but his legs are swelling,when he goes out he doesnt wear it, but does wear it about 18 hours a day while hes redundant at the moment, the point im getting to is,if this procedure is offerd then take it, sooner rather than later, helps so much with the pain also! The procedure is quick, first op was 4 hours the second 1 and a half hours, he ws out after the operation about 3 hours later! walking fine and at home.
Hi
Check your red blood count, and if its anemia, this can cause symptoms like that,I think its called pernitus anemia, probally spelt wrong..hard to walk around at the beginning gets easier through out the day, however may have nothing to do with it at all, but this type of amemia, also causes pins and needles in feet and hands and makes feet initially difficult to stand on. Its a stab in the dark,but if your like this in the morning then it gets better , if your on your feet all day , you will get bad legs at night… may be on your legs too much?
Hi Fitterfly
You seem in a similsr situation to me, 3 kids. my husband was also so strong young and strong minded, and he very quickly changed, and its heart renching to see him struggling,Its been a year now stem cell done,2 spinal operations, still not in remission hes been made redundant!and all the way through it only had total 42 days of work !!!!What helped him was being kept focus working, even though he scared people being in work with the way he changed so quickly! He didnt even tell any one he was ill, however obvious something wrong when lose half body weight, your hair and your bent over in pain,when they finally found out 7 months later when he had stem cell, he had cancer they made him redundant, this is now whats killing him hes trying to be the man he always was, Ive come to terms that things will always be different, but thats the thing, its different, and you will both slowly adapt.
As long as your husband is getting the correct medical care from the doctors , the only other thing you can do is try and talk together,and ensure you make sure your mentaly ok, make sure you get a break if that means escape through work or a hobby or meeting some friends for a cup of tea, so you dont get depressed, remember you and giving time to you.I found that slowly making my husband do things for him self again, has made him feal better about him self, he goes for a walk to the pub 5 mins down the road and back every night for an hour so he can have some space to think, and always has done, even after his stem cell transplant,just to keep some of his old normality,also gives me time for me! things will never be nomal again, but we are both just starting to accept that, it takes time, try and do some nice things , so not consontracting what you cant do any more, so what if the house if a little more untidy! you cant do everything….little steps, start getting bigger, he will not want to see you upset,its hard but it does slowly start to get better, thinking of you..and good luck
Hi
Can I ask you, what were your light chains when they allowed you to go on maintenance and stop or not start chemo? thanks, and well done!
Hi Jill, My husband was 56,000! when he was first diagnosed nearly 15 months ago, with kidney failure, he was very ill, however had no symptoms until 1 month before he was diagnosed,,hes had a stem cell transplant, it was very difficult after the stem cell transplant, which went extreamly well he has been back on chemo, and still have light chains around the 175, mark, this is the lowest hes ever been,as long as your mum is being treated and monitored try not to worry , the point Im trying to get over is that everyone is so different,and different people seem to be able to tolerate differnt levels,the health professionals will have it in hand, for your information we used the Royal Marsden and I cant thank them enough.Good Luck your mum will not want you to worry any questions you need to ask, ask your mums consaltant and perhaps they can explain the plan they have for her treatment, xx
Hi , Itsmy husband with MM, PLEASE CAN I ASK ARE YOU STILL ON THE DRUGS WHICH KEEP THE PAIN FROM YOUR HANDS AND FEET? tHANKS
