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#1 marktwain

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Posted 01 January 2009 - 11:42 AM

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?

#2 Sweet

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Posted 01 January 2009 - 01:19 PM

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
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#3 marktwain

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Posted 02 January 2009 - 05:45 AM

Thank you. Your response has brightened my day.

#4 janey

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Posted 02 January 2009 - 06:53 AM

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
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#5 jefa

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Posted 02 January 2009 - 07:26 AM

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

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#6 Amanda Thorpe

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Posted 02 January 2009 - 01:04 PM

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
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#7 marktwain

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Posted 02 January 2009 - 05:14 PM

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

#8 marktwain

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Posted 04 January 2009 - 11:55 AM

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!

#9 Amanda Thorpe

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Posted 04 January 2009 - 12:52 PM

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
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#10 debonair susie

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Posted 05 January 2009 - 07:16 AM

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,

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#11 Margaret

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Posted 05 January 2009 - 10:26 AM

<<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

#12 Snowbird

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Posted 05 January 2009 - 11:09 AM

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!

#13 Nina

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Posted 06 January 2009 - 03:33 PM

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)

#14 Shelley Ensz

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Posted 08 January 2009 - 01:58 PM

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
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#15 marktwain

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Posted 09 January 2009 - 03:39 AM

Things are better. Thanks to all of you for great support. It means a lot.

#16 marktwain

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Posted 09 January 2009 - 06:26 AM

There is also a problem with migraines, becoming more frequent. This is the second one in two days.

Anyone have any info on what causes this and possible solutions?

Thank you again.

#17 Margaret

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Posted 09 January 2009 - 08:03 AM

<<Anyone have any info on what causes this and possible solutions?>>

Hi Mark ,

I only know what others have said.....cheeses, chocolate, and hormonal imbalances. My own Mom refuses to go off her low dose estrogen pills because as soon as she does she gets wicked migraines.....she's in her 70's!!! I hope you find the answer.

Take care, Everyone.
Margaret

#18 Shelley Ensz

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Posted 09 January 2009 - 09:49 AM

Hi Mark,

I'm sorry your wife is having migraines. It is definitely something to see her doctor about. I have had them for years. I do know (now) that one of my triggers for them is food intolerances (gluten/casein/soy). But I had no idea at all for ages and was under the impression you had to have allergic reactions in order to be intolerant of a food <sigh>...oh, what I don't know could fill the ocean!

Anyway, we have a page on Brain Involvement which includes vascular headaches. While I'm at it, gluten intolerance is a known cause of dozens of autoimmune diseases (including Hashimoto's, psoriasis, Sjogren's, and scleroderma to name just a few), and in my particular case, according to my doctors, it definitely is a factor. But there are so many different aspects to autoimmune diseases and inflammation.

My migraines can also be triggered by strong direct light (like at the dentist's office) and the thumping lower beat of some music, especially if I have had unrefreshing sleep, as enough insomnia can also bring them on for me.

I can just send my sympathies and hope she and her medical team figures out her causes or triggers, and a remedy that helps. There are a lot of treatment options. But for me, I find it is best to just do everything I possibly can to avoid my triggers.
Warm Hugs,

Shelley Ensz
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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.