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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Sweet

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Posted 21 March 2007 - 10:25 AM

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)

#2 Clementine

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Posted 21 March 2007 - 11:15 AM

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

#3 ErinF

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Posted 21 March 2007 - 11:48 AM

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

#4 janey

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Posted 21 March 2007 - 11:50 AM

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
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#5 Heidi

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Posted 21 March 2007 - 01:53 PM

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

#6 nan

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Posted 21 March 2007 - 03:46 PM

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

#7 Shelley Ensz

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Posted 21 March 2007 - 03:54 PM

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.

#8 kramer57

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Posted 22 March 2007 - 02:39 AM

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

#9 WestCoast1

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Posted 22 March 2007 - 04:16 AM

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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#10 bookworm

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Posted 22 March 2007 - 08:05 AM

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

#11 Sweet

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Posted 23 March 2007 - 11:55 AM

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)

#12 Piper

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Posted 23 March 2007 - 01:29 PM

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



#13 Sweet

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Posted 23 March 2007 - 02:38 PM

Hi Pipes and thanks!

I think that would bother me if my doctor said something like that. Let me know how the tests turn out k?

Love ya! Sweet
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#14 emmie

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Posted 23 March 2007 - 05:56 PM

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

#15 Sweet

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Posted 24 March 2007 - 08:50 AM

Hi Emmie,

I do have muscle relaxers I can take. They make me pretty out of it, so I try not to take them unless I'm in severe pain. I'd rather tough it out.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#16 Heidi

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Posted 24 March 2007 - 09:54 AM

Hi Sweet,

Did you ask your doctor about the Celebrex at your last appointment? I got to start taking mine again this morning and it is amazing how quickly it reduced the pain (both joint and muscle pain). I am still a bit achey, but not like I was just a few days ago and am expecting it to lessen even more in a couple of days. I don't know if it would help you, but it may be worth trying.

Warm wishes,
Heidi

#17 Sweet

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Posted 24 March 2007 - 10:34 AM

Heidi,

I did ask him actually and he said the Arthrotec that I have is just as good BUT I have to actually take it. :D :P I'm terrible about compliance. I'm working on it though.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#18 kelowna52

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Posted 24 March 2007 - 01:00 PM

Hello Sweet, I'm sorry to hear about your added Fibro to the mix. I also have Fibro., it's funny the last time I saw my rheumatologist he said I neded to do exercises in a swimming pool, and asked if I had one. We did have one, when we lived in the Desert, if you didn't it would be pretty bad, considering the awfull heat we had there. I take Norvasc for my Raynauds, I don't think it seems to help much. I take Flexeril for my neck and shoulder pain, it does seem to help, but makes the constipation a lot worse, just what I need.

It is quite funny how these doctors seem to think we're all made of money. I would love to have a hot tub here but the cost of propane is way to high here. As far as the Fibro. I use my heating pad just about everyday. The heat feels great for the pain. I hope your feeling better soon. Are you getting as much rain as we are here on the Coast in Washington? I'm beginning to think we won't need to put a pool in, we'll have one put in automatically by nature. Take care.

Jackie S.

#19 barefut

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Posted 25 March 2007 - 05:48 AM

Hi Sweet,

Sorry to hear of your fibro diagnosis. Hope you find what works to make you feel better soon!

Love, Barefut

#20 Shelley Ensz

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Posted 25 March 2007 - 07:26 AM

Hi Sweet,

I'm sorry to hear you have fibromyalgia, on top of everything else. It's on my list of things I'd most love to give away, but even the friendly folks at the thrift store won't take it! :huh:

Piper, I am still trying to figure out what your doctor meant by "grumbling disease". I sure hope they weren't implying that people with UCTD are simply complainers! They should walk a mile in your shoes and they sure wouldn't make comments like that any more.
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.