nightfrog

Okay Here Is My Question

10 posts in this topic

does anyone else have the sensation in the legs like they are wrapped realy tight in a ace bandage that never goes away also my foot also feels strange like a block of wood between my big toe and the pinkie toe also that wrapped feeling the dr did a tuning fork test on it and I could not feel the vibrations strange just wanted to know if I was alone in this or is it semi normal it has been going on for three years thank you for all the wonderful info on this site it realy helps to now im not crazy Smiles to all Betty

Share this post


Link to post
Share on other sites

Hi Betty,

 

Do you also have swelling (edema) in your legs and feet, or scleroderma skin involvement (tight skin) there? Or is this something separate from that?


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Nightfrog,

If it is indeed tight skin, as Shelley inquired, I experienced those symptoms in the earlier years of my Sclero diagnosis. For me, the tautness lasted for about 8 years, but that's not to say that's what is going on with you, nor that yours will be the same timeframe, if it is. I only wanted to pass on that I have the skin involvement, yet the skin has since relaxed/softened.

 

Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Betty,

 

I have that feeling on one calf and foot. I have neuropathy in that foot and sometimes it's numb and other times painful and taking elavil at bed time helps it. For a few years I have also had the feeling of being wrapped in an ace bandage around my torso, especially when I lay flat or on my right side. It feels like my heart slows down also. I've had an echo to check my aorta and it was fine so the Dr. doesn't really know what's causing this but it is a weird feeling

 

Take care,

Hugs, Piper

Share this post


Link to post
Share on other sites

shelley so far I dont have any skin involvment but they do swell if im on my feet alot

 

susie thank you for the hope it might go away someday :blink: hopefully soon

 

piper I'll ask dr about elavil we just got a new P.A. at the clinic I go to she seems to be a real caring dr she didn't just dismiss me I went there on thursday with the worst shoulder pain I have ever had she saw me without a appt. and it was 10 min till closing she put me on a 10 day run on prednisone (wonderful ) the least pain ive been in in 5yrs also when stoped in yesterday to pick up some meds I was having heart flutters since the day after I started the prednisone and asked her if it was the med. just was wondering and she hauls me in to the room and does a ekg. it was nothing serious thank goodness but she has decided I have high blood pressure now they took it twice about 30 min apart and it was 160 / 100 both times

she did not like that so another pill to add to the growing daily pile sorry to ramble thank you all for sharing betty

Share this post


Link to post
Share on other sites

Nightfrog,

 

Could you elaborate on the feelings in your toes?

 

I have noticed a weird feeling in my left foot too. When I curl my toes it feels like I am grasping a pencil behind my toes. Feels like swelling but different - if that makes sense?! :blink:

 

When I feel behind my toes with my fingers it is not painful at all and it feels like a hard lump between the joint and the base of my middle two toes.

 

Hard to describe this, hope I have made myself clear. Not sure I want/need to see doctor about it?

 

What about you?

 

Thanks,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

barefoot to me the skin on my foot feels normal it is the middle of my foot that feels funny under the skin like I have a block wrapped in my foot everything moves normal just that strange feeling dont know if that helps or not but I hope so betty

Share this post


Link to post
Share on other sites

Good morning Betty,

Sorrry to hear that you are having shoulder pain. Several of us are having pain with our sockets. Hopefully, you will be feeling better soon. Did you get prescribed Norvasc for your blood pressure? That is what I was given. I have been on in for about 2 1/2 years now. I use to always be freezing or just downright cold. Now, I run around the house in just a tank top and light weight shorts. I have never been this warm my entire life. Maybe it is time to ajust my Norvasc. I don't have a Raynaud's problem or high blood pressure numbers anymore. Awesome! Let us know how your new med works in a couple weeks. After the prednisone is out of your system and the pain and or swelling is out of your system isn't the problem with your should still going to be there? Can years of abuse be healed with just the prednisone? Or does it just delay surgery until another time? I haven't had mine checked out yet the pain grows worse daily. If I bump my shoulder it is so painful I can't use it for about 5 minutes. I figure mine is caused from years of tennis. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Sheryl, I still feel we are "soul sister" :rolleyes: But I have to admit, my abilities where playing tennis was/is concerned have never even come close to yours :P .

 

However, my right shoulder feels like that arm was tied to the bumper of a car and pulled around in circles :( . My rheumatologist tells me it's bursitis, but no diagnostics have ever been done to confirm or deny... and this has been a real "pain" for over 20 years!

 

In regard to Norvasc... I only take 2.5mgs for my raynauds, so I'm not sure if that's contributing to my "warmth", or if it's my hyperthroid issue. Anyway, I'm in that "warm club" of yours, too.

 

Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hey sister suzie, I was cold even with my hyperthyroidism. I had internal shakes with I had the toxicosis. I was usually just sitting on a couch or somthing and I would start quaking internaly. Not super cold just a bit cold when the attacks would come on. Yes, Norvasc is a wonderful help with several medical situations. I wish I had known about it years ago. Could have saved me alot of torment. Welcome to our "warm club" anyone who is enjoying the results of Norvasc.

Suzie, I just joined a couple of USTA tennis leagues. I am on a 50 and over and a 4.0 group with some younguns. I hope I can sustain my ratings this year as I am not in as great of shape as I have been in the past. I am slowing down. Now I have to depend on accuracy instead of speed. And a large amount of Motrin to get everything moving most mornings. Summer leagues are over. This is the first year I have joined an indoor tennis group. I usually just wait to get to Florida and recondition. Now, I will be ready for them when I arrive instead of them beating me up until I get back in shape and all the rust off my joints. I'm still not losing much weight with all this getting in shape stuff. But, I do have muscle. A one or two week set back can turn my muscle to mush pretty quick. Well, I have used all my spoons for today. Baking my husband an apple pie and I also made 4 loaves of Friendship Bread. Yumm! Showered and ready to curl up and watch TV. Everyone enjoy your evening. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now