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Developing sclerodactyly


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#1 marsha

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Posted 01 June 2011 - 08:36 AM

Hi

Always have tons of questions!! As I was reading through some posts, it got me thinking about this cross over or overlapping diseases. Do most people with autoimmune diseases have more than one? Does one kind of Scleroderma have a higher rate of having over lapping? I have CREST and I have recently started to have problems with sclerodactyly. Is that skin involvement?

After reading posts I am wondering if my rheumatologist isn't taking a strong enough stance on my disease, he seemed to be only concerned with my Raynaud's, which the calcium blocker is only taking the edge off my fingers and not my feet. I am looking at some of the specialists you have listed there is one in CT where I grew up. I am having my Physician refer me to that clinic.

I am becoming increasingly worried about my hands and their swelling. It is mostly on my right hand and when I walk I cannot even close my hand without the skin feeling like it is ripping and the pain in the joints is overwhelming. Also have swelling in my ankles and feet and my joints from my hips down ache all the time. I have to be honest I am becoming very worried that my disease is all of a sudden progressing after the rheumatologist told me not to worry. What to do..

Sometimes I feel like a pain to keep calling the doctors.. I feel like I'm being a hypochondriac. I go for more blood work next week. Just needed to vent and ask some questions that no one seems to want to answer for me..

Marsha :emoticons-thankyou:

#2 Amanda Thorpe

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Posted 01 June 2011 - 09:08 AM

Hello Marsha

Firstly never feel a hypocondriac and never feel bad about contacting your medical team...that's what you pay them for.

I have sclerodactyly and yes it is caused by skin involvement. Also have a look at the information we have about joint involvement. Unlike most people with scleroderma I don't have joint pain, all of my pain is concentrated in my feet.

According to one study one third of people with scleroderma developed other autoimmune diseases. Not surprising I guess when you consider that scleroderma is caused because our immune systems are attacking us, kinda opens the door to other attacks. :lol:

I have interstitial cystitis, an autoimmune disease that can be associated with scleroderma, and was actually diagnosed with it 3 years prior to being diagnosed with scleroderma. I have a friend who has 10 autoimmune diseases...10! Mind you it's my understanding that if you have a disease as an overlap condition that you don't develop the full blown disease but just parts of it. For example I have another friend with diffuse scleroderma and overlap lupus, the only lupus symptom she has is skin involvement.

I hope your referral to a scleroderma expert is quick and that you can get some answers and failing answer the confidence in your medical team to know you're getting the best treatment.

Take care and keep posting.
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#3 Shelley Ensz

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Posted 01 June 2011 - 09:55 AM

Hi Marsha,

As I understand it, scleroderma experts quit using the term "CREST" because they became frustrated with other doctors failing to further categorize the disease into either Limited or Diffuse Scleroderma. Let's assume for the sake of this discussion that your doctor meant that you have Limited Systemic Sclerosis (aka Limited Scleroderma). The only thing "limited" about it is that the skin involvement, if any, would be limited to the hands, feet, and/or face rather than anywhere (like Diffuse Systemic Sclerosis, aka Diffuse Scleroderma). So it would normally be expected for you to eventually develop some sort of skin involvement, and sclerodactyly is the term used when skin involvement affects the hands, causing them to swell and then possibly tighten and harden. See Types of Scleroderma on our main site, for more detailed information.

There are a handful of us on the forums who had a very good experience with having extensive occupational therapy along with anti-inflammatories when our hands started becoming affected. It is extremely important to get in to see a scleroderma expert for this. If you have any significant wait for your first appointment (at some centers it is many months for the initial appointment), then be sure to go back to your primary care doctor and ask for a referral for occupational hand therapy. You want to begin therapy at the very first sign of trouble, such as bilateral hand swelling. They will teach you how to warm your hands prior to exercising them (usually with warm paraffin wax); how to exercise and stretch your hands very regularly; and perhaps prescribe special splints for daytime and/or nighttime use.

The worst possible thing is to avoid using your hands right now, and that is very easy to do with the pain and swelling setting in. Once the hardening begins, it is pretty much irreversible unless the disease naturally ebbs on its own or with treatment, so you want to take pro-active steps to try to avoid that. Not everyone is able to bypass significant permanent damage to their hands from scleroderma (so this is not to fault them, in any way!). But there are some of us who have, and all of us tell the same story: making a point of actively using the hands, get occupational therapy (which is learning how to deal with the issue, not training for a job, as some have thought), and be diligent about doing all the at-home exercises, as instructed by the professional.

With any luck, you can then join our team of folks who managed to bypass significant permanent damage by lots of hard work at the very first sign of trouble, and adherence to a good medical plan.

Here are some warm hugs to tide you over.

:emoticons-group-hug:
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.

#4 Chopper

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Posted 01 June 2011 - 10:01 AM

Hi Marsha,

I get that feeling too, like I don't want to be a pain and I fear calling, I think most of us can attest to that. Sometimes I make myself wait a little bit and think about it and ask myself how patient should I be with that concern. Sometimes I can wait, sometimes I can't. I have 3 autoimmune diseases that I know of. All were surprising except the thyroid because everyone in my immediately family has the same problem there, but no one else currently has the others. I often wonder which one came first and did it start the chain reaction. Let us know how your new referral goes - sounds like a good direction!

Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#5 Sweet

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Posted 01 June 2011 - 10:15 AM

Hi Marsha,

Sorry to hear that the "S" in CREST is showing up on you. Are you on Plaquenil at all? It's really the first line of defense with several autoimmune diseases, and if you are not already on it, I would talk with your doctor about it. It helps with fatigue, can slow down the progression, and in some cases halt the disease in it's tracks. Keep us posted. :flowers:
Warm and gentle hugs,

Pamela
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#6 marsha

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Posted 02 June 2011 - 06:49 AM

You all are the BEST!!! I am so happy that I have stumbled upon this site!. Pamela the only meds I'm on is for the Raynaud's and its only taking the edge off my hands, not working at all on my feet. What does the plaquenil do? I am starting to feel a bit upset that I have seen 3 so called specialists and they all told me not to worry. It seems like my only problem is the Raynaud's. I have been having the swelling and tightening in my hands for about a year or so, but never put 2 and 2 together until recently when its become painful and hard to move them. I did relay this to my doctor but sometimes I feel as if I am not being heard, or that I'm being pushed aside, which is frustrating. I will let you all know how I make out with the referral to the clinic. Thanks again for being so supportive and not making me feel like I've gone looney!!!

Marsha

#7 Sweet

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Posted 02 June 2011 - 10:34 AM

Hi Marsha,

They're really unsure as to how the Plaquenil actually works or why, but it does! It would be worth talking to your doctors about it. I just know that without it, I can't function, and I've not progressed nearly as fast as they thought I would. I feels it's made a big difference for me.
Warm and gentle hugs,

Pamela
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#8 Joelf

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Posted 02 June 2011 - 03:07 PM

Hi Marsha,

I'm sorry you're suffering such pain and discomfort with your hands and some of your other joints. You really shouldn't worry about calling your doctor; it is his job to help and reassure you, or refer you to someone who can.

I hope you can get your referral to a Scleroderma specialist very soon and although I've never taken Plaquenil myself, Sweet's recommendation is a really good one. Here's another Plaquenil link for you to peruse.

Do let us know when you get your referral and how it goes.

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#9 marsha

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Posted 02 June 2011 - 05:46 PM

TOTALLY FRUSTRATED!~ :temper-tantrum: I couldn't stand the ache of my hand and legs anymore so made a quick trip to my PPO, He thinks that it is swelling from the Nifedipine, and walking so he wants to change my meds and told me to stop my 2 mile walk. I am tired of feeling like what I am saying is being not taken seriously. I wish I knew what to do, I can't get into my rhematologist any sooner then the end of July!!! Im still working on the Clinic in CT, I just want to cry, I ache, I can't grab with my right hand (which is my dominant hand) its weak and aches... I have to say this out loud... I HATE THIS ILLNESS!!!! It's turned me from a fairly healthy woman to older beyond my years in 2 years time, I try to stay positive and tell myself that it could ALWAYS be worse.. Thanks again everyone for your kind words and support!! :emoticons-group-hug:

#10 Shelley Ensz

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Posted 02 June 2011 - 06:08 PM

Hi Marsha,

I'm sorry you are so frustrated and having such a difficult time. Have you also been prescribed some diuretics to help reduce the edema? There are so many possible causes of it, and medication side effects can be a huge culprit, so maybe it will settle down in a few days.

For your rheumatologist appointment, if they are nearby, you can ask to be put on their "cancellation list", and then you'll be called when they have a cancellation. Usually this is very short notice but sometimes it can be a day ahead. I've also found it helps to call in a reminder that you still want to be on the cancellation list, the following week(s) because some offices don't track it all that well.

You can also ask to speak to your rheumatologist's nurse, to see if they have any advise for you in the meantime. If you are not on a diuretic, let them know that. Bear in mind, too, that it's not always the disease (it can be med side effects) and that the treatment might be the same, regardless of what is causing it. For example, avoiding salt, taking diuretics, keeping your feet up. I've had edema for years (oh, wait, would that more appropriately be decades, now?) and still need to watch for salt, sometimes take diuretics, and put my feet up at every opportunity. When it first occurred, I gained 30 pounds of water weight in a month. I could hardly walk or use my hands, even breathing was difficult when I laid down. But with the meds, my goodness, within a few weeks I was far better. So, keep the faith and look forward to soon finding a way to alleviate the bloat. Then, you'll surely be doing the Sclero Happy Dance in relief!

:emoticons-group-hug:
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.

#11 Chopper

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Posted 03 June 2011 - 08:46 AM

Oh Marsha, I feel for you!!!! The squeaky wheel gets the grease - make some calls and 'squeak' loudly so you can get some grease! :emoticons-group-hug: I hope you find some relief soon!

Chopper
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#12 kacklebird

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Posted 04 June 2011 - 04:50 PM

I'm so sorry you're having such a hard time. I would call the rheumatologist's office every day or every other day to see if they get a cancellation unless they have a waiting list. I hope you can get in soon. I think the majority in the group would say they HATE their illness too. I know I certainly agree with you as it's turned my life upside down. :flowers: Hang in there.