Sweet

Pcp Appt.

24 posts in this topic

Hi Guys,

 

Just got back from my primary care appt. He states that I now have Fibro. hmmmmm not sure what I think about that. Of the 18 points of pain, I had 12, you need 10 to have the diagnosis.

 

He also wants me to consider get a hyperbaric chamber, (said it has been known to really decrease symptoms of connective tissue diseases), and a swimming pool put in my home! Does he think I'm rich???? Told him I would look into it.

 

He also started my on Hyrtin for my rayanuds.....that's been getting a bit worse.

 

Ummm, I think that's about it. :)


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Dear Sweet,

Oh dear, sorry about the new diagnosis. Do you feel you really have it? Or are you just bummed about it? I am sorry!!!

 

Have you been on any medication for your Raynaud's previously to this new one?

 

About the hyperbaric oxygen chamber...I know someone that has access to one (nice wealthy DR. friend owns one and allows her to use it for her sclero) and it has really helped her. I have another friend that uses one for sclero and it has helped. My Dr. said it would not help me...I have sine sclero? I didn't ask too many questions about it because I did not have access to one.

 

xo

Jen

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Hi Sweet,

Boy, just one more diagnosis--it seems like so many things go along with sclero. I hope that your primary care physician is able to give you something to help with the pain. On a happy note, I was recently told by a tax person that things like hot tubs, saunas, and pools can be "written off" on your taxes if the purchase was made to help you with a medical condition. :D That certainly doesn't help pay stuff up front, but hey, it's something to consider!

 

Sending hugs,

Erin

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Hey Darling,

Thanks for the update, but so sorry that something else got added to your list of ailments. Bummer!

 

Yea, right - just go out and buy a hyperbaric chamber, :lol: Apparently Hyperbaric oxygen therapy works for fibro but I guess sometimes we do have to take into account cost and space. It would be interesting to see if you could get insurance to pay for it. :lol: Maybe the next best thing is warm water exercise at a local gym or YWCA. Hopefully, you aren't in a lot of pain from this, but if you are, finding relief is definitely something to pursue. I hope the new medication helps your Raynaud's. The Bosentan I'm taking for PH sure has helped my Raynaud's.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Sweet,

 

Sorry to hear you have added another diagnosis! Ugh! I can't imagine what it would cost to get your own hyperbaric chamber, but I can't imagine it is very affordable. Can't you have weekly treatments or something like that at a local hospital instead? And, I do hope your new med for Raynaud's works well for you. Please do keep us posted on what you find out. You are in my thoughts.

 

Warm wishes,

Heidi

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Hi Sweet,

Sorry about fibro getting added to your list. I have fibro, CREST, and Sjogren's. I call it the triple threat! :D I have had fibro and Sjogren's since 1998. Pool walking in warm water really does help. My brother has been telling me about the hyperbaric chamber being good for scleroderma. Take care of yourself!

Nan

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Hi Sweet,

 

I'm sorry to hear you also have fibromyalgia. It's quite a bundle to deal with, just in itself.

 

For others who don't know what it is, we have a very long page on Fibromyalgia. But think twice about putting a swimming pool in your home unless you can make sure its kept very warm (for the achiness and Raynaud's.)


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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Hi Sweet,

I'm sorry to hear you have Fibro. now too! I sure got a chuckle from your Dr telling you to buy a pool & hyperbaric chamber though. Sure doctor, I'll just pop down to Walmart right now and get those! :lol:

How about one of those small exercise pools, with water that flows so you can swim against it? Maybe insurance would help pay for that.

If you can't find a hyperbaric chamber at a hospital, if you have a local sports team they might have one you could use - I've heard of football players using them sometimes to recover from injuries. (Call Terrell Owens of the Dallas Cowboys, maybe you could borrow his haha!)

Best wishes,

Karen

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Sweet~

I hate to hear that you have to deal with yet another issue. Were here for you.

 

.I hope that whatever you chose to do for treatment, you find relief!


*WestCoast*

 

********

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Hi, Sweet,

 

Around here, hyperbaric chamber treatment is available through a local pain management clinic -- possibly more than one clinic. This form of treatment should be available to you unless you live in a very small community. If your doctor is recommending it, your insurance mght pay for it. It's a therapy, after all.

 

As for a pool, our YMCA offers classes in arthritis exercises -- gentle and in warm water. I keep thinking I may sign up for that, but haven' gotten around to it.

 

I'm sorry about your pain. Good luck.

 

 

 

Mary in Texas

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Hi Everyone,

 

Thanks for the feedback. I am going to check into both of these possibilties.

 

Karen you made me laugh! Thanks so much it's been a few days since I've done that. By the way, I checked out Walmart and they didn't carry either one :P

 

Jen, yes I do think I have it. I've known for awhile myself, but just didn't want to admit it. We'll just see how things go.

 

Hugs to all!!

 

Sweet


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Sweet, I'm so sorry to hear that you've added fibro to your repertoire. I was wondering if that's what you had when you described your pain. I have it also and it's miserable. I hope you find something for relief.

I was at the doctors the other day and he's concerned with my hands being unable to open up now and has sent me for a whole whack of new blood work. I asked if I had enough criteria to be called UCTD and he said he liked to call it grumbling disease. Not really sure what that means.

The warm water of a pool would help I'm sure but our pool is always freezing until about August. That's the only time it's warm enough for my raynauds. Some places have arthritis programs in warm pools and I've heard they are very good.

Take care.

Hugs,

 

Piper

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Hi Sweet,

 

sorry to hear about the added diagnosis. Did your doctor give you any muscle relaxants etc to help with the pain?

 

If you do get that hyper...chamber, mayber you could rent it out to others and pay it off that way. Let us know if you try any of the warm water classes. I've also heard good things about them.

 

xoxo emmie

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