jaxs

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6 posts in this topic

Hey there,

 

I've not been on for such along time but since I have been I have been getting worse. My Raynaud's is so bad I stay in bed under the quilt with my electric blanket on and heating. As soon as I move I turn a deadly white. My hands are swollen and tight. I'm still in pain with my legs, aching and sore, but I find the heat helps.

 

I have also noticed that I'm now constipated a lot, with stomach cramps, bloating and diarrhea all at the same time. At the moment my skin feels like I've been rubbed down with sand paper and is sore and itchy. Its driving me mad. I'm still mobile but not if its cold, even if I wrap up I'm cold. Its hard doing, but I'm not complaining as my mind is pretty alert at the moment which is a miracle. :lol: I'm only on meds for Raynaud's, and have been told to take pain medications. I suppose this does help.

 

Okay, hope you guys are keeping well.

 

Bye for now,

 

jaxsxx :P


live life for today and not for tomorrow

 

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Hi Jax sorry to hear your having a bad time at the moment. The Raynaud's can be dreadful especially with all the cold weather we've had here in the UK, winter certainly seems to be never ending & I know I wish I could just hibernate over the winter because of it.

Perhaps you need to see your Rheumatologist again to tell him what's going on. Ask him for more help or your general practitioner.

I take something just for pain & also use amitryptalene for nerve type pain which also helps me with sleep, I also have meds for reflux etc.

 

Take Care & stay warm

 

Jensue

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Hello Jaxs

 

I'm sorry that whilst you've been away you've gotten worse. :(

 

Skin issues can really drag you down, if you think about it our skin is our largest organ so when it's effected boy do we know about it! There are creams, lotions and antihistamines that can help with soreness and itching so don't think you just have to put up with it. Ask your rheumatologist what they recommends.

 

Bowel issues are not nice to live with and how generous of sclero to give you the full spectrum all at the same time! There are also various things to help bowel issues that your rheumatologist could recommend.

 

Sometimes I think that we assume we just have to grin and bear with it when sclero throws something else at us. Although we can't cure a symptom we can do things to make it more bearable. I don't know where you're based in the UK but some hospitals have sclero nurse or Raynaud's nurse advice lines and they are very helpful for quick ad hoc advice.

 

Alternatively keep pickin' the brains of this forum!

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Jax,

 

I am sorry you haven't been feeling well. I hope the heating blanket does a better job in keeping you warm and toasty. The only consolation I can give you is spring and summer are not too far away. The warm hot sun should help with warding off Raynaud's. I'm looking forward to the warmer days for that reason too!

 

Are you using something for the dry itchy skin? A good lotion or cream applied every day should help relieve the itchiness. I agree bringing up these issues with your rheumatologist is a good idea so he/she can recommend medication for your skin and digestive problems.

 

I am also grateful that my brain is sclero-free and still functions!! :)

 

Warm hugs,

Razz


Live well, Laugh often, Love much

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Hi jaxs,

 

I'm with the ladies...sure wish you were feeling better than you are.

 

Being so sensitive to cold, with the effects of Raynauds IS No picnic,

so there are many of us who can sure empathize with what you are

going through.

 

I have a snuggly robe that my sweet brother got for me for this very

reason and beleive me...it sure serves me well!

What I really find works well for me...is a dash to the shower and getting

warmed up in there. When I feel all warmed up, I quickly towel off and when

all done, I don the snuggly robe and dash to my bed and snuggle down!

I love flannel sheets when I'm going through what you are! Though I don't

have one right now, I used to turn on the electric blanket just as I was heading

to the shower and by the time I was done with my shower, my bed was toasty!

 

Now, I agree with the ladies...that an appointment may be needed, erring on the

side of caution, to make sure more isn't going on with you.

 

Please keep us posted on how you are doing?


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Jaxs

 

Sorry to hear you've having such a nasty time, to say the least. I want to welcome you back; it has been a while and we've missed you. Glad you are able to give us an update but do wish you were feeling much better! Hope you'll be on the up side of things in no time.


Sending good wishes your way!

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