This topic contains 18 replies, has 11 voices, and was last updated by 
sandydeli 12 years, 5 months ago.
Hi everyone. Has anyone suffered joint pain following SCT. First they thought it was peripheral neuropathy and put me on amyolotryptilin (can't spell it) then gabapentin then cocodamol but nothing stopped the pain. I was sent to rheumatologist had pet scan nothing (which I'm grateful for). Consultant then put me on 30mg peredisone steroids which did the trick wonderfully. They tried to wean me off them but pain came back and now I'm on 15mg steroids. I'm back at work 3full days plus covering colleagues being off. I'm 7 months post SCT. Am I pushing myself. How have others been please. Sorry to be long winded. Oh and hair came back so curly I look like a cross between a poodle and a toilet brush here hee. Love to you all kay x
[quote]Am I pushing myself. [/quote]
In a nutshell, unless you are some sort of wonderwoman? Yes, bigtime.:-) 🙁 :-0
You may get away with it but if you body is suffering, including joint pain, then it is you causing the problems, not your body.:-P
Look at it this way Kay… during your SCT your body's capability to produce stem cells, your life giving stem cells, was shut down… completely and utterly. During the procedure your body was running on batteries until the re-introduced stem cells from your harvest cloyed to your bones and started bonding, binding and reproducing… then, when your body showed the magic 0.5… proof positive that your cells had taken, you were sent home to make the slow, I repeat, slow, process of building up to a point where you and your stem cells were in harmony.8-)
Here's the main point… you remain Kay, a full grown woman with a body that wants to get on with life… while your stem cells are babies. They may have gained in numbers but they have yet to mature… they are not even teenagers yet in the recovery process… they, at best, are eight to ten year olds… yet you are pushing them as if they were thirty plus… and you wonder why they are complaining?:-0
Like all children they complain by moaning… by giving you joint pain. And your answer? Kick them into submission with steroids.:'-(
This is where the medics fail us… they send us away with instructions and expect us to follow them to the 'T'. When you went back in with your joint pain they should have looked at where you were, asked what your lifestyle was and then… well they wouldn't but they would have done much better by you to have laughed at you and ask what do you expect. But they being medics went for the option of scans and steroids etc because they thought it was possibly PN… but somebody somewhere should have asked the simple questions… and nipped it in the bud.:-(
But that's just my 2p… but I would bet everything that I own that I am right.:-D
At seven months post SCT you will probably get away with it… but you didn't start your wonderwoman antics at seven months… more likely at five or even earlier… well your body was lying to you… plain and simple… everything was in place except for your pre-juvenile stem cells… bless them.:-S
I do understand your eagerness to be normal but come on Kay… give the little miracle workers a fighting chance.;-)
Dai.
Hi Kay
Well am afraid Dai is correct and he keeps his money am sorry to say.
I had my SCT in Dec 2009 and I still get tired and I mean Real Tired.
so a sleep when your body tels you to and not think am all done its been X number of months, take your time an no rush
Good luck with the hair Lol xxx
Love Tom "Onwards and Upwards" xxx
hi Kay
Wow you are a wonder woman I am so glad you can go to work it must be a real milestone for you Steriod are good for pain killing but can play havac with you in other ways I havnt had joint pain but take predisilone for my chronic renal trouble I am diabetic and it puts my sugars up a lot which is a real problem but its better than DEX. I think the poodle look is nice i wish my hair was curly instead of dead straight
Have a nice Easter
Love Jo x
Ha ha 🙂 thanks Dai. I feel like I have been well told off. I needed it too. Think I am still in denial that I even had myeloma and the treatment. But as they say "denial is not a river in Egypt". It's a powerful feeling. Will take note and slow down. Think I just needed reassurance that I was not imagining my tiredness. Thanks Tom for your reassurance. And jo I had my curls cut off today and my hair blow dried straight. You are right we are never happy:-) love kay x
Hiya
I am now 15 months post transplant and my legs ached like toothache. They have improved now and my hair grew back darker and a mass of curls. Since having it cut now a few times it has gone back to its usual greyish colour and I have lost the curly perm look!I work 6 hours daily and like Tom get really tired and need to sleep.Try not to do too much and rest when needed.
Jo have you developed diabetes since having mm treatments? I have just been diagnosed with type 2 and wondered if anyone else has?
Thanks
take care all
Ozzy
Hi Ozzey
I was type 2 diabetic before I was diagnosed with MM I was very well managed but since all the steriods during CDT and now a small dose because of the renal failure they have put me on insulin as steriods raise the sugar levels so much this could be what has happened in your case I'm manageing quite well but its not ideal but all these side effects seem to go with the territory
Keep well
Love Jo x
Hi Kay and all
I'm a few weeks ahead of you on the sct front and also have the curls now, getting them cut next week, will post new photo then I think. Today I can barely move, having woken up with severe back pain, the first I've had for a year as it went when I started the chemo last February, I'm hoping it will settle in a day or so, and I did nothing to induce it which is a mystery. Anyway, I'm not back at work yet, doc thinks after holiday is the time to aim for. It's hard not to push yourself but I understand that feeling of trying to get back to normality as soon as possible and put the 'ill' role in the background for as long as possible.
I think Dai is right and you sound as though you are pushing a bit hard on your traumatised body. When you think about it, if you have a minor op on your toe or nose, the cells are not fully recovered for a year though they are at about 80% after 6-812 weeks, so the cell damage and regeneration after sct is much more comprehensive. Be gentle on yourself:-D
Love Helen
Hi Kay I agree with whats already been said , you need to be kinder to your body !! Your determination is incredible but you have been through the most challenging treament and your body does need time to recover If you push yourself too hard now you could delay you recovery rather than speed it up so please listen to your body and rest when you need to It wont take as long as you think before you are fighting fit again love Bridget x
Hi Kay,
I'm with the others…think you are amazing to have gone back to work so much. I think about it and then know that I can't when i get ill from just overdoing it with the kids and looking after the house.
I suppose where you get joint pain, I get coughs and colds and exhaustion.
Perhaps think about doing a bit less if your work are accommodating? You owe it to your body to try to be kind to it or it might stop fighting for you!!
Take care
Debs x
Thanks to everyone. Have slowed down a lot and feeling much better. Joints still painful but I have acceptance now. Wishing you all well kay x
Hi Kay
Well done for taking on the challenge of the return to work.
I worry about your continuted pain. Have you asked to see the Pallitative Care Team? I know it sounds drastic when we want to think of ourselves as as normal as we can be, but they will treat us because we do have a life threatening illness. I have found it really helpful to have someone who is taking an overview of all my pains. But maybe you think your Gp is doing the best they can.
Do put yourself first in all this. I do very much understand your desire to return to normality and kick MM into the background. I am wanting to do this myself. I was devastated when one of the nurses came on Thursday and said "the team have met and we don't think you will make any more progress to looking after yourself!" It was very insensative and not true!! They have revised what they said BUT you do wonder. They just wanted to write me off to carers several times a day. One thing, it makles me want to show them and I am making progress!!! They don't know that I am aiming to be back on the church rota as soon as possible!
Love to you.
Mavis xxxx
Hi Mavis. Feeling much better after slowing down. Getting plenty of rest. My body kicks me when I'm over doing it. Good for you with your positive attitude. I need small goals to keep me going. Rushed them first of all but getting balance now. Just had monthly blood test back and all stable. Love kay x
Hi Kay
I know what you mean that "The Body Kicks" when you have done too much 🙁 as ytou know am back at work (light dutie's) 5 days 6/2 every day, am just about done by the friday so 4 days sounds good as we have had a couple of 4 day weeks and that was great 🙂 money still comming in and not as weary 🙁 but hey ho its a job and its money 🙂
Take Care Kay and stay strong 🙂
Love Tom xx
Hi everyone so glad to hear its not just me with pains after my sct , it's now 7 months since mine and my pain in my back and ribs we'r worrying me !!! Thinking my myeloma was back !!,
I went on holiday end of march never again legs swelt up on flight never went down all holiday then came home with a stonking cold !!!! Doc thought I might have a DVT so ended up with injections in my belly every day till they could fit me in for scan all clear but then pain in my ribs so sent back to hospital for chest x ray !!!! All clear thank god !!!
So all in all had a crap few weeks so no more holidays abroad for me UK will do me from now on!!!
As for going back to work !!! I'm now 56 I couldn't possibly do the job I used to do slicing bacon all day !!! Starting at six everyday I can't Evan wake up for eight these days !!!! If I'v only got ten fifteen years left why kill myself working I'm haveing my retirement years now !!! I worked hard all my life and felt really guilty not going back but now I'v realised your just a number and can be replaced any where.
I'm lucky I can manage on the pittance the government give me.
Any way rant over hope everyones ok.
Sandra.
Ps my hairs come back dead curly too I love it lol.
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