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Biomarker for Diffuse Scleroderma skin has been discovered!


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Bad day today


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#1 amberjolie

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Posted 19 May 2012 - 08:20 PM

Today was a "not so good" day, in terms of how I was feeling. I took my methotrexate last night, and it always makes me stiffer the following day (I haven't yet seen any positive effects from it). And then I was just very fatigued all day. And the family took our dog for a walk, and my hip and knee started getting particularly sore.

I thought exercise was supposed to help us limber up.

Sorry, just felt sorry for myself and needed to vent.

#2 Joelf

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Posted 19 May 2012 - 11:48 PM

Hi Amberjolie,

I'm really sorry to hear that you haven't been feeling so well.

I think that unfortunately we do get days like that, where everything seems just a bit more of an effort. I sympathise with your hip and knee pain, as my hips and knees play me up sometimes and can be quite painful.

I think exercise does loosen things a little, but obviously when you're not feeling very well, you should try ease off a bit and not overdo it.

I hope you feel much better very soon and that today is a big improvement on yesterday!

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#3 jad12

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Posted 20 May 2012 - 12:32 AM

Sorry you had a bad day. :(
Do you think a push bike might help assist in the walk?
A gentle swim might be better on bad days, maybe in warm water if you have a pool nearby that has a hot water pool. I don't think they would let the dog in but you could try.

#4 debonair susie

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Posted 20 May 2012 - 09:27 AM

Hi amber,

I'm inclined to agree with Jo. Anytime I'm not feeling well, I tend to take it easier than usual until I am feeling better. Yes, exercise IS good for us, but we really need to listen to our bodies; I've found I just cannot push myself anymore, yet I sure enjoy those days when I'm feeling better; I'm able to appreciate those times! ;)

I hope that you feel better today :balloons:
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#5 Buttons

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Posted 20 May 2012 - 10:15 AM

Hi Amberjolie,

How long have you been taking the Methotrexate? It can take quite a while for it to help. I started taking it last September but only really started to feel the benefits from it in February but I did start off on a very low dose and the consultant has gradually increased it. I didn't see any sudden change, it was all very gradual. I do still feel a bit queasy on the day I take it and the following day I tend to get a headache but I can cope with it.

I find that very gentle stretching helps (I do Tai Chi) but when I feel bad I tend to take it very easy and don't push to hard or it takes me longer to get over.

Hope you feel a bit better soon.

Buttons

#6 amberjolie

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Posted 21 May 2012 - 11:45 AM

Hi everyone.

I'm feeling better (at least better in terms of still having joint pain, but not as bad as it was).

Swimming unfortunately isn't an option for me anymore because I seem to ALWAYS get foot cramps now when I try to swim (which is really frustrating because I used to be an avid swimmer). Also, the stiffness and soreness in my ankles at one point made it impossible for me to kick, but I think at least that part is better than it was. I think it may be a circulation issue, because I take multi-vitamins, so I'm getting the potassium I need each day.

I've been taking methotrexate for two months, at 20 mg total per week. A rheumatologist had told me that it should start helping the joints in a couple of months, and if it's going to do anything for the skin, that would be more like 6 months. I have my appointment with the rheumatologist in my area who specializes in scleroderma on Thursday, so I'll see what she says about it, whether I should have noticed anything yet or not.

But I'm not sure what's considered a "low dose", so I don't know if I just have to be patient like Buttons, or whether it should have done something already.

Does anyone find their muscles feel stiff, too? My upper back and neck are so stiff all the time.

#7 Amanda Thorpe

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Posted 21 May 2012 - 12:57 PM

Hello Ambejoilie

"Exercise is good for you" only applies to healthy people, the rest of us have to consider the risk/benefit ratio. For me to exercise would involve standing up and maybe walking which has become soooooo painful so for me the risk far outweighs the benefit and I am not the only one. Listen to your body, if a lot of walking hurts don't, just because other people can doesn't mean you can or should. It might be time to get creative on the exercise front or limit your walking time or route it where you can sit and take regular rests. Remember you are a snowflake so you will be different to everyone else...that's a good thing!

I was on methotrexate 15mg once a week and really can't say what it did or didn't do. I didn't see any outward improvements but have no idea what it did internally of course so have no idea whether I would have got worse without it. I do know that it's a long 'ole road with these things for sure, it may be worth persevering, from what I remember the fatigue and nausea that accompanied a dose for about 2-3 days went away after a few months. I have never had joint pain so can't comment on that. At least you have a good rheumatologist working with you and a firm diagnosis.

Take care.

Take care.
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#8 Shelley Ensz

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Posted 22 May 2012 - 08:50 PM

Hi Amberjolie,

I hope the methotrexate starts kicking in for you sometime soon. I second all the things others have said in this thread, particularly that with scleroderma we really need to listen to our bodies. What we can do can sometimes vary drastically from day to day or even hour to hour.

I'm a firm believer in using our creativity to help overcome the many problems that scleroderma can present, as others have alluded to Perhaps you could spend some time brainstorming with your family on ways that you could all enjoy walking the dog together, even on days you aren't up to par?

For example, maybe you could take the dog to a Dog Park, so the dog could run about and have fun, but you could sit on the bench, if you need to. Or perhaps you can find an area to walk the dog that has areas where you can sit. Or someone could carry a folding chair for you, so that you could rest, if need be. Or, find a place to walk that is flat (no hills or steps). Perhaps agree to all shorten the walk on days you are more tuckered, or when the weather is bad, etc.

Eventually the meds will probably kick in and make it easier for you. However, odds are you'll still have days that are less fabulous than others, where a back-up plan or two may still come in handy.
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Shelley Ensz
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#9 marsha

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Posted 23 May 2012 - 08:42 AM

Amberjolie,

I agree with everyone, I tend to exercise more when I'm feeling good, and sometimes if I'm not feeling good and I do I end up feeling worse the next few days.. I have learned that if I really feel like I have to get out and move I'll go sit under a nice shady tree and enjoy just being outside. I am going to find out tomorrow if chemo is my near future, Good luck with everything and never feel bad for venting we all have to do it from time to time just to keep our sanity!!
Marsha

#10 KayTee

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Posted 23 May 2012 - 07:43 PM

Hi Amberjolie:
I hope you are feeling better. There are those days to exercise and those days/weeks? when it is more difficult. I try to learn from and love my body even when it sometimes doesn't love me :)
Warm hugs.
Kay Tee