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Hi, long time no posting


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#1 uknlv

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Posted 25 February 2012 - 10:17 AM

Hi everyone,

I haven't posted in a while as I have been very sick lately. After the arm fracture things just went a bit downhill from there. They have been lowering my steroids and I am now off of them completely. And although I know all the side affects of them, I want them back! I haven't been in this much pain in a very long time.

I have been having major breathing problems and have just got out of hospital following my right heart catheter, it was not so bad. Was terrified but I had a terrific doctor who chatted to me through the whole thing and it was over before I knew it. Bit of good news, no Pulmonary Hypertension! But still struggling to breathe, so not sure what to do about that one. Got a call into my Connective Tissue nurse to see if I can get in sooner or they can suggest anything to help.

While in the hospital the bottoms of my feet started to hurt. Just on the heel and the pads in the front. Was a bit weird, but now they feel like I am walking on glass. No pain killers are helping and I was wondering if anyone else had this happen to them? I have calcification in my feet, and I guess maybe it is because the steroids are all out of my system now as I have been off of them for two weeks now. If anyone has had this issue can you suggest anything that might help, it is getting almost impossible to walk. I do it as I still need to get to the bathroom and stuff. But dang does it hurt!

I am also having trouble with my muscles in my arms, shoulders and hands. Everything just aches all the time. I feel like I have gone ten rounds in a spin dryer. :lol:

Well that is all of my issues at the moment. Thanks in advance for any advice.

Cheers
Jean
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#2 Joelf

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Posted 25 February 2012 - 11:33 AM

Hi Jean,

I'm so sorry to hear that you've been very poorly recently. Funnily enough, I was only thinking of you the other day and wondered how you were as you haven't been posting for a while.

I suspect that as you're no longer taking the steroids this has contributed to the pain you're having in the muscles of your arms, shoulders and hands. I know what you mean by the steroid use; my lung consultant has been so pleased with the improvement in my lungs that she has suggested I reduce my steroids from 7.5mgs to 5mgs per day. Her only reservation is that although my lungs seem to have stablised my joints are very painful and she was a little concerned that by reducing the steroids I would be incapacitated by the joint pain. We've decided to implement the lower dose to see how I get on, with the option of increasing it again if necessary.

I'm so pleased to hear that you don't have Pulmonary Hypertension although it's a shame that you're still experiencing breathing problems. I do hope that your specialist nurse can help you with the shortage of breath with which you're suffering as it can be very debilitating.

I haven't experienced the pain you have in your feet but I've included a link to a very useful thread Bottom of Feet Hurt as well as Heel Pain which I hope will be helpful to you. I expect some of our members will also be along with some first hand advice for you.

Do post again and don't be a stranger, will you?

:emoticons-group-hug:

Best wishes,

Jo Frowde
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#3 Amanda Thorpe

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Posted 25 February 2012 - 05:09 PM

Hello Jean

Have a look at this topic as well as it's pretty similar as in the issue is foot pain. Prof Denton referred to the pain I get in my feet as a result of standing and walking as mechanical pain. As per the topic I have 5 types of foot pain mechanical, rheumatic, neuropathic, ulcer and skin pain, I literally dread putting one foot in front of another and this is the first reason why I am a wheelchair user.

The only way I cope is by using a wheelchair out of doors, due to my hands and fatigue it's an assisted one which means I can't go out of my home alone and in doors I shuffle around from room to room in pain. I have so many different types of slippers and slipper boots trying to find ones with thickly padded soles and we had the whole house carpeted, apart from the kitchen, investing in a really good underlay so that the surface I walk on is as soft as possible.

Nevertheless the foot pain dictates everything I do as it is that bad and over the years it has just got worse. If I want to wash my hair I have to wait for a day when the pain is only say 5 out of 10 instead of 7 so I can stand for a few minutes whilst I wash my hair over the bath. I have a bath chair but can't wash my hair this way because the shampoo etc irritates my skin and this makes a task that would take a few minutes into one that takes like 20 and due to fatigue I just can't do it!

I am going to seek referral to pain management at some point in the future. I am sorry you have this and I understand how literally disabling it is.

Good news about the pulmonary hypertension though! About the breathlessness, don't forget that you may well be much more unfit that you were pre scleroderma so will get winded doing tasks you could do before and remember fatigue can make it feel hard to breathe.

Take care.
Amanda Thorpe
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#4 uknlv

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Posted 26 February 2012 - 07:11 AM

Thanks Jo and Amanda, I looked at the links. And I am putting Ibuprofen gel on my feet, well my hubby is. I have been wearing really thick slipper socks and slippers for added cushion. I have also been applying heat to the bottoms of my feet, which seems to keep the throbbing down when I am not standing up. That first up out of bed in the morning is the worst!

I also have a wheel chair, and like you Amanda they gave me an assisted one as my hands weren't strong enough to move myself around. I have a walking stick and use it when shuffling through the rooms. Just trying to deal with one more issue, seems to just be one thing after the other, get one item cleared up and another one takes it's place. <Sigh>

I had a 'friend' tell me to just deal with things, it could be worse, which of course I know this, but it still doesn't make what I deal with daily any easier. But this is something I will learn to deal with I'm sure. As I am not ready for the alternative yet :lol:

Thanks for the support as always, and I plan on hanging around a bit more as sitting is what I do best these days hehe!
Jean James
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#5 Amanda Thorpe

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Posted 26 February 2012 - 03:17 PM

Hello Jean

Girl, who gave you a chair? I had to buy mine! I can't use a cane because of sclerodactyly but so wish I could, in fact the one thing that helped with the foot pain whilst walking was crutches because they could take the weight of me feet. Only ptoblems was that I could only walk a few steps with thembecause of not being able to hold the crutch!

Some friend eh? Sure it could be worse but that does not mean it's bad NOW!

Take care and keep posting.
Amanda Thorpe
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#6 uknlv

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Posted 27 February 2012 - 12:15 PM

I got my chair from the NHS Amanda, special order and brand spankin new! I was most definately surprised. I was referred by my Rheumatologist to Occupational Therapy and they ordered me one straight away. Maybe it was the crying and so forth in the doctors office about not being able to go anywhere and being housebound. Which was all true, except the crying bit, hehe

But it has made the world of difference to my life, I can now go shopping and do things that I could never do before as I couldn't walk any distance. I'm hoping my hands don't get much worse, the skin has tightened up something awful lately and cannot make a fist anymore. No more punching bags for me I guess, will have to do open handed slaps from now on hehe. I was referred to have Iloprost, but I decided against. I have been so sick for the last 5 months or so that the thought of taking something that might even slightly make me sick, (which we all know it is usually worse than slightly) was more than I can bear right now. And my fingers aren't that bad at the moment, touch wood!

And yeah some friend, I do not wish ill on anyone but there are days when I think if I could just give people like that a day in the life, boy would they be in for a shocker!

Still smiling and crawling around, have put everything I need upstairs for now, microwave, toaster, food and so forth so I don't have to walk to far to get things when I am here alone. This has helped tremendously. As I am no longer on water and yogurt all day!
Jean James
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#7 Amanda Thorpe

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Posted 27 February 2012 - 02:00 PM

D'ya know we never even thought about that, we just went and bought one, never thought about going through the doctor. Silly really because that's what we did to get crutches.

Oh for a day in MY life by someone else! I know exactly what you mean.

Take care.
Amanda Thorpe
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