marktwain

New to board; have questions

18 posts in this topic

My wife was diagnosed with scleroderma over 15 years ago. She has stayed relatively healthy with medicine and taking care of herself.

 

In the past six months, her finger ulcer problems; headaches (migraines); and ear discomfort (Meniere's?) have really accelerated. She also has Raynaud's.

 

I've become very worried about her health recently and wonder if I'm just over-thinking it. Is this a cycle or does it indicate something else?

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Hi Mark and welcome to the Sclero Forums.

 

It's so sweet of you to post on behalf of your wife. I find that my illness and symptoms are cyclic. So it doesn't surprise me at all that your wife seems to be having more problems all at once. Most likely she is in a flare and should consult with her provider to see what can be done to alleviate her discomfort.

 

Again, welcome!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Mark,

Welcome to the ISN forums! I would like to ditto everything that Sweet said. The only thing I would add is to emphasize the importance of keeping your wife's Raynaud's in check. By not doing so will only worsen the digital ulcers. I have been using those little disposal heating pads all winter and they are the greatest thing since sliced bread! I open one up, in 15 minutes is hot and I hold in my hand or put it in a glove throughout the day. It last about 10 hours. My Raynaud's episodes have been minimal this winter as a result.

 

I hope this flare doesn't last long and that your wife recovers from it quickly. Please keep us informed.

 

Big Hugs to you both,


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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Hello, Mark. Let me join Sweet and Janey in welcomimg you to the ISN Sclero Forums. We have quite a few scleroderma partners on board, so you should be able to gain some perspective by reading posts. I presume that your wife is seeing a scleroderma specialist or a rheumatologist who is familiar with scleroderma. I would suggest that she discusses with her doctor the various medications that can improve the ulcer situation by reducing the Raynaud's attacks. You can read more about them on our Raynaud's Treatments: Medications page. And please invite your wife to join us, too.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hello Mark

 

Welcome to you and hello to your wife.

 

Things can get worse during a flare and then get better again, to quote, it's the nature of the disease to wax and wane.

 

Obviously check these changes with a sclero doctor to make sure any meds that need adjusting/altered are.

 

I find it interesting, on a purely selfish note, that you mention migraine as a worsening sympton because I have found the same thing now for over 6 months although migraine isn't a recognised sclero symptom/issue. Strange. <_<

 

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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Thank you. Yes, in addition to migraines, she is also having memory problems. Short-term memory stuff.

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Her finger ulcers are getting worse. She is having a difficult time right now and the pain really affects her emotional well-being. She is quite a fine lady and I just hate to see her like this. I am passing along all your suggestions, and they are much-appreciated!

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What may help your wife's emotional well being is if she joins in here and has what's known as a rant as she's among people who have ranted because of ulcers and other sclero goodies themselves.

 

It'a a safe place to be and she may pick up better ways of managing/treating the ulcers.

 

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 Mark,

 

It is so great...that you are here because with the number of members...whom span the world...this is...in my humble opinion...the very best forum to get feedback, etc.

 

Everyone who has posted on your thread has offered good information. Not only do we care about our cyber family...we share many of the problems your wife is experiencing.

 

As to the memory problems...I can answer to that, as I also have those issues. Hers could well be caused by the pain she experiences, as well as some of the medications she takes.

 

Sweet addressed the flare...even though your wife was diagnosed over 15 years ago, new issues seem to come up, from time to time...which may be the case with her. When we think we've got just about enough, where our health is concerned...up pops another, or more.

 

For you, I'm sure it's a very helpless feeling. However, Janey and Sweet, to name only a couple have stressed the importance of staying on top of the ulcers and their very necessary care.

 

I salute you for your dedication, concern and caring to your wife, Mark. Please know that we are very pleased that you are posting here and we hope that we can help you feel comfortable enough, as well as your wife about posting here about your concerns.

 

Also available to us is chat on Wednesdays and Sundays...a great time to chat with a few members from here about health concerns.

 

Hugs to both you and your wife...May these issues calm down for her soon.

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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<<Thank you. Yes, in addition to migraines, she is also having memory problems. Short-term memory stuff.>>

 

Hi Mark ,

 

Welcome to the group. I am also a caregiver.....it is my son who has the UCTD/Sclero. I am concerned as to whether your wife has seeked help for possible depression. If she is having so much pain, migraines, and short term memory loss, the sclero may also cause autoimmune depression. It may be something that she can't avoid. The same autoimmune process attacks the serotonin levels in the brain and can lead to depression.

 

Take care, Everyone.

Margaret

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Hi Mark

 

Don't think I can add anything more at this point...just wanted to welcome you as well and say how good it is that you have found this site. I'm certain you will find it most helpful for both yourself and your wife. It's a great place to get first hand reliable information on this disease. Keep us posted.


Sending good wishes your way!

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Hi Mark and Welcome!

Thank you for supporting your wife in her struggles with this terrible disease. She is a very lucky lady!

I'm sure you will find many supporting friends here on the sclero forums ~ and lots of valuable information.

Give your wife our warm hugs, lots of them!!

Much love,

Nina (DE)

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Hello Mark,

 

I just want to welcome you to Sclero Forums, and send my greetings and hugs to you and your wife. How are things going for you today?


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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