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Kamlesh

Lower body pain

10 posts in this topic

Hi friends,

 

Have not posted for a long time, however have talked to many of you on Sunday chat.

 

I am doing okay, however from last 3-4 months, I have been increasing having lower body pain.

 

I am having pain starting from lower back to muscle pain in thighs and legs. I have gone through many tests – shows low blood counts, WBC below 3, low iron, etc. My last DLCO was down by 12%

 

After hectic work week, it is not uncommon for me to sleep over 10 hours weekends.

 

I have an appointment with oncologist next week.

 

Despite all issues, I tried to walk 2-3 miles a day, breathing exercises, yoga, etc.

 

Any suggestion on how to manage body pains.


Kind regards,

 

Kamlesh

 

 

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Hi Kamlesh,

 

I'm sorry you are having such lower body pain now, and that your tests are low, too. Do they suspect cancer of some sort, or is it just to help find the source of your low blood counts that they are sending you to an oncologist?


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.

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Did you get tested for inflammation (Sed Rate, CRP)? These tests are non-specific (don't tell you what's causing the inflammation), but it can be very helpful to know if you have an inflammatory process going on.

 

Good luck,

 

Craig

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Kamlesh,

I am sorry to hear you are having lower body pain and hope that everything turns out well with your tests. It seems like it never ends.

 

You seem to be doing an awful lot of things with working all week, walking several times and exercising. No wonder you sleep 10 hours on a weekend! I am retired on disability and not working and I sleep that much every night. If you need it you need it.

 

Here's hoping we hear from you again soon and that things are going better.

 

miocean


ISN Artist

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Hi everyone,

Thank you very much for responses.

 

Last year went through bone marrow biopsies to rule out any cancer.

 

I am simply too tired from stress of work and everything else.

 

My Oncologist ordered bunch of more blood tests. She observed too low iron level and she started infusion of iron. Iron infusion requires anti-histamine infusion and that made me very sick yesterday. I need to go through six more rounds of iron infusion.

 

 

 

Next two weeks will have added stress of business travels, which I am not looking forward to.

 

 


Kind regards,

 

Kamlesh

 

 

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Hi Kamlesh,

 

I'm sorry you're so anemic; that can certainly make a person feel rotten! Have they figured out any cause for the anemia, yet? With scleroderma, they particularly need to rule out any gastrointestinal bleeding, of course.

 

Anyway, I sure hope the infusions help restore some of your vim and vigor!


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.

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Kamlesh, I hope you start to feel some effects from the Iron infusion'(s) soon. Keep moving and walking, we know you are getting plenty of rest on weekends. Rest helps the body to heal. You don't really have to sleep to rest, though it really helps the mind, brain and heart. I am happy to hear that you continue your walks. I hope you write us back soon letting us know that the infusions are working. It is a shame that the anti-histamines make you ill. I will have to do a bit of reading on iron infusions. Best of Luck to you.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Kamlesh,

 

I am truly sorry that you 've been having such a difficult time, of late.

 

Having the infusions and reactions you had, I only hope there can be something done to lessen the chance of sickness that you experienced.

 

The stress of travel compounding the problem is sure something you don't need to be going through either. Yet, you know that this will hopefully subside, once you've received a couple more infusions.

 

We'll keep our fingers and toes crossed for you until you update us further.

Keeping good thoughts in the meantime.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Kamlesh ,

 

I, too, will keep you in my thoughts. Is it possible to take a break from work while going through the IV infusions?

 

Take care, Everyone.

Margaret

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Hi everyone,

 

Thank you for support and encouragement.

 

Yesterday, I had second infusion. I asked for reducing anti-histamine and doctor agreed to reduce from 25 ml to 12.5 ml, so it went OK.

 

Last year, I went through testing to rule out any gastrointestinal bleeding,

 

I have excellent doctors, and they truly care for me. They have not been able to cause of anemic conditions, low energy level, as well as muscle pain in thighs and calf muscles.

 

Lately, it is increasingly becoming difficult to handle all issues.

 

 


Kind regards,

 

Kamlesh

 

 

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