Scleroderma contracture?

[hopefulmama]

Hi everyone,

I saw Dr. F just last week and he said still no sign of SD and put me on high D3 5000iu a day to reduce inflammation and help Hashimotos.

Once I started D3, my hands which had been constantly ice cold for weeks became warm and the right hand felt a little tight, but nothing too weird, my rings still fit normally.

Two days ago I noticed that on the third finger of my right hand there was a thickness of the skin under the end finger joint. Yesterday I noticed that on the third finer of my left hand, there is almost a thick lump of skin.

I was trying to figure out what this was, and one thing I ran across was the beginning of a contracture.

If this really is the start of a contracture, it seems self evident that I have SD… when you put that together with the esophageal motility problems, raynaud’s and telegiantasias (probably spelled that wrong). It would be classic CREST no matter what Dr. F says.

In which case, I would want to go on the doxy TODAY instead of in few months.

Is there anyone with SD and contractures who can tell me if theirs started with painless thickening of skin under the joint of the top digits?

Thank you so much. I am scared today and I want to redouble my efforts in any way I can, because as always my kids need me and I need them.

Thank you for any advice you have, even if it is bad news. Better to know sooner than later.

A

[hopefulmama]

Now I’m thinking it could be calcinosis from too much Vitamin D.

“The main cause of this type is failure of the kidneys, which are unable to rid the body of excess calcium and phosphates. Overstimulation of the thyroid gland can create too much calcium and phosphates in the blood as well. Ingestion of too much Vitamin D may be a causal factor. Also, diseases that destroy bone tissue, like Pagets Disease or various bone cancers can cause metastatic calcinosis.”

This would make sense because my body has definitely been reacting very strongly to the 5000iu D3… when I take it I get pain in my back and shoulders and my heart races. I think I’ll try going down on my dose a little. And probably give Dr. F a call as well.

Thanks for any thoughts you have 🙂

[mschmidt]

Hi there,

I’m not sure if my comments are going to help but, I’ll just tell you about my experience. I had such swollen fingers at first, that I had no wrinkles on my fingers or hands, whatsoever. They didn’t feel “tight” in the sense that the skin was tight–just tight in the sense that I had a lot of swelling going on. One of the first “aha” scary moments for me, when I knew in my heart that I had SD, despite all the “You definitively don’t have SD” (by 4 doctors, by the way), was when I had what looked like a pimple in between my ring finger and pinky. I could literally pull off the “head” of the pimple, and it was really hard material that came off. I felt a slight pulling in the palm of my hands, and had little balls/pockets of hard skin–looked like a callous you’d get from being hard on your hands–ie. lifting weights, doing manual labor, etc. Shortly thereafter, my fingers started contracting in–began with my ring and pinky fingers, followed by my index and middle finger. My thumbs never contracted but, they are eerily straight. I now know that what was happening definitely was collagen accumulation, and the excess collagen was leaking out in between those 2 fingers. As soon as I started Minocin, it started to go away, and I no longer have that hard spot between the fingers. I honestly thought at the time that it was the start of an ulceration, and was freaked out. Then, I saw pics of ulcerations and knew that it wasn’t that. Also, I had a homehealth nurse, who had Limited SD for 15 years, and she had telegiantasias all over her chest, arms, and face, as well as calcinosis on her hands, chest and arms–HUGE lumps scattered all over her—so I knew it wasn’t calcinosis.

I have to say, I’m surprised that Dr. F isn’t being more aggressive with your treatment. It seems to me (and this is just my opinion) that you are exhibiting some early signs of SD, and personally, I’d want to address it earlier than later. I’m sure you’ve stated this before but, is there a reason why you want to go on doxy as opposed to Minocin? I know how scary and frustrated you feel right now–I went through the “limbo” stage of not knowing exactly what was wrong with me–to the tune of 13 months of anxiety.

I’m a little surprised that Vitamin D3 is giving you such a strong reaction. What are your numbers? How low are you? In my case, I was in the mid-20’s at first, and supplementing w/D3 made me feel BETTER, not worse. Are you maybe using a brand that has something in it you could be reacting to? Feel free to PM me with any questions, and I’m happy to talk to you as well, if you need to.

Take Care,

Maria

[hopefulmama]

Hi Maria!

Thanks so much for your note. It really helps me so much to get more information. I have no reason for preferring doxy to minocycline, doxy is just what Dr. F has mentioned to me on both visits as an option. He never mentioned minocycline or Minocin. I don’t know why. Do they both work for lyme equally? I guess my only preference if I go on an antibiotic would be that it work for both the lyme and the SD if what I have is SD.

At the moment I still have a ton of wrinkles on my fingers, they all look normal (wrinkly) and loose skin. Also no real swelling although the hand that took the impact of my fall down the stairs a few months ago has definitely been more inflamed since then than the hand that was not injured.

You are not the only person surprised that Dr. F isn’t being more aggressive with my treatment – but I think at this point he honestly does not think I have scleroderma. He has checked me very carefully both times and told me he saw no signs of it, nor any reflection in my bloodwork. I don’t know what he will say though when I call and tell him about this new development in my hands. That may change things. I did try calling their office today but had forgotten it is closed on Fridays so it will have to wait for next week.

One thing I am interested in will be to see if the drops for mycoplasma by raintree nutrition make any difference. If I start to get better with the drops, it would prove mycoplasma at the base of what is going on… and that would support infectious theory. I know a lot of thinking around Minocin for SD is that it may be anti-inflammatory or anti-collagenic. So one would think that by healing infection (even with herbs) the SD would go away but if it takes abx to make the cure, perhaps it is the inflammation modulation. Either way, I don’t care how I get well (or stay well) as long as I do.

I have never met anyone in person with scleroderma so I don’t know what the difference is between how I look and how a normal man or woman with SD (limited or diffuse) would look. I have tried to look at photos on the net but those are all basically extreme cases and so I don’t know what someone with mild SD’s hands would look like compared with mine.

Lupus can also cause a lot of the symptoms I have experienced and I think that holds true even with the joint/hand calcinosis or ganglion cysts. I have other weird things happening with me that I have never heard a SD patient describe, such as vision changes. My LLMD said she thought I was trending toward lupus, so who knows maybe that would explain it or maybe I’m trending toward MCTD.

Sigh. Maybe I am just a normal person with thyroid disease and too much focus on the small changes that take place in my body. Either way, there isn’t anyone I can talk to or see about it in person today so I had better get back to caring for my kiddos. Son is home with 103 degree fever today… apparently walking pneumonia is going around (yetch, mycoplasma!) and a lot of the little kids we know have it. I hate knowing that their mycoplasma infections may be setting them up for worse things later in life 🙁

Thanks again Maria.

A

[hopefulmama]

oh PS –

My Vitamin D levels are at 39 (down from 58 last summer).
Supplementation at 5000iu but I am very tiny so it could be I needed to start out slower, especially if my body is not absorbing calcium well.

[DAR]

I agree with MSCHMIDT my Scleroderma started out basically the same way, with bumps on my fingers, one on my wrist and my fingers would swell then it would go down, then all of a sudden I started to drop weight like crazy ( I could never lose weight before) it took at least a year of going to doctors before they confirmed that I did have scleroderma, I asked to be put on mino I brought in all of the literature about ap and I how I believed this would help, but my doctor would only give me doxy and it seemed to keep the scleroderma at bay but not really putting it in remission, then after badgering my doctor enough she finally put me on mino and things started to turn around now 2 years later I feel great, I have gotten my energy back, I can actually interlock my fingers again something I could not do at all , I have wrinkles on my face and I don’t care , my doctor of coarse said it must be spontaneous remission, but I know better, the sooner you can get on mino the better off you will be, with this diease you just can’t wait . Good Luck

[hopefulmama]

Thank you so much, DAR. I really appreciate your feedback, and it is SO exciting to hear that not only has your SD not progressed but 3 years after its start you are well and enjoying life. This kind of inspirational news makes me calm down immensely, because I feel much calmer every time I remind myself that there really IS a treatment that works for most folks for SD.

You know, my gut says that I need to trust Dr. F. I will call his office on Monday and let them know about the skin changes around the top joints of my middle fingers. They may want to start me on an antibiotic right away, and if so I will definitely try it.

Dr. F has seen a lot of patients with SD in his career and many of the folks with SD on this board who have stopped their progression or turned it around have done so with his help. I have to believe that he knows SD when he sees it, and I know for certain that he does treat aggressively when he thinks it is indicated (just by reading what he has done for many of you).

It could be that I have some other autoimmune thing going on which has a few characteristics of SD but is not actually SD. Either way, I believe that he will be responsive and I also have LLMD helping me… so I am in good hands. At some point for my own peace of mind I have to trust the judgment of my AP doc… but I’ll give him all the new info and that may change his feeling on things.

One thing I wonder about is whether I have Raynauds or not. My hands and feet get cold but never change color, at least not dramatically. They get pale, and then when I run them under warm water they get rosy again. I’m not sure if that qualifies as true Raynaud’s… but I guess it is safer to assume I do have it and act accordingly by keeping warm and taking fish oils. It has occurred to me now and then that this might be due to my untreated hypothyroidism.

Thanks again for everything!

[mschmidt]

A,

I wanted to comment on your Raynauds–just to be clear, my fingers NEVER turned the 3 colors typical of Raynauds. I get the blanching/pale whiteness of my fingers, that are from my knuckles to my fingertips. They warm within 2-5 minutes, with a rosey hue to them. I definitely have Raynauds, just not the typical white to red to blue color spectrum. I know that Raynauds and SD go hand in hand but, you’re right, it’s also indicated in other AI diseases. What concerns me are your skin changes, which sound SD to me, or at least SD combined with MCTD. I want you to trust your gut for sure but, in the same way, I would hope you want to prevent things from happening as well. It’s a VERY tough place to be in–where you’re at right now because nothing is “glaring” at you saying “AHA!!” Believe me when I say, I was there, too. I’m just really uneasy about waiting for things to show up–maybe that’s my own personal stuff coming in, based on my personal experience with SD, and doctors blowing off some early, obvious symptoms. I know that Dr. F has seen MANY SD patients over the years, and has been very successful treating them–I’m one of his success stories. There just aren’t too many things that affect the skin like SD does–YES, thyroid issues can make your hands and feet cold, as well as make you have hairloss, inability to sweat, and dry skin. BUT, it doesn’t cause “tight, thickened” skin. You have 3 symptoms of Limited SD already, and that concerns me. Initially, I presented w/only swelling, then Raynaud’s–it took 9 months before it went anywhere else, then it spread like wildfire within 3 months. I’m not saying this to scare you, as everyone is different with this disease. I would just feel horrible 6 months fro 😕 m now if something happened to you that could’ve been prevented–that’s all. I’m going to shut up now…

Take Care,

Maria

[hopefulmama]

Maria,

Thanks you so much for sharing further. I so appreciate you, and I am so grateful for all that you have shared with me both on the board and privately. You are amazing, a blessing to me and all the members of this board.

I think if you were here, looking at my hands in person, you would tell me “That does not look like tight, thickened skin” My hands are not swollen (although as I mentioned the hand that I landed on when I fell down the stairs is definitely inflamed and possibly arthritic. My LLMD told me that lyme likes to settle in injuries, so this make sense.) My rings fit on perfectly as always, and my hands are supple and wrinkly. Language is tricky and sometimes when I am describing a symptom I may not pick the right words to explain it.

Maybe I can figure out a way to take a photo of my actual hands, and upload them. And then if you see my hands and you still think, “Hey that looks just like I did!” then that will be more straightforward – for both of us.

Dr. F actually looked at my hands last week – he held them, squeezed them, examined them. He looked at all of the skin on my entire body. He checked out the width of my smile, had me make lots of crazy faces to see the suppleness of my skin on my face, etc. It was a long exam. I was in there for two hours. As you know first hand, he is a very thorough guy. He noted the heart murmur and telangiectasias. We talked at length about mycoplasma and my thyroid.

I too believe in being proactive and preventative, but I personally think there is some risk to going on long term antibiotics without a clear indication to do so. This is just what I think for me, knowing how sensitive my body has been historically to medicines. I will call his office on Monday and if they say, “We’re sending you a Rx” or “We need to see you again asap” then I will follow through on those things.

I really am doing a ton of stuff now to improve my health – and although I know that herbs are not well loved or understood on this board, they are highly indicated for lyme and I am on a full protocol right now for borrelia, babesia and mycoplasma. I am actually taking anti-bacterials every day and have been for months. They have been shown in vitro and in vivo to work against the bacteria in question. I am not buying them off the shelf, I am getting them from a doctor well known for treating lyme. So, I’ve actually taken all of this very seriously and I am being proactive in my own way. I have an AP Doc, a LLMD, done all the IgeneX testing, and get checked up once a month. I think things are well in hand.

What you said about your Raynauds was really interesting to me… because my hands get cold and feet get cold and stay cold for the entire day, not just a few minutes. They do not warm up again easily. I have noticed that even in the Infrared Sauna, and also in a hot shower, my feet are still ice cold. So that sounds like a clear difference.

I also wanted to share that I have had the “Raynauds” (or whatever it is) for many years – and it worsened with my third pregnancy which was over two years ago now. My esophageal troubles which started 8 months ago seem to be directly linked to allergies – when I have a post nasal drip I feel the globus sensation and when my sinuses are clear, I can swallow just fine. This took a lot of time and doctor visits to figure out but in the end, I may have had poor motility for many years. I’ve certainly had NERD (non-erosive) for almost 20 years. When the GI specialist at UC Davis – one of the top in the world – went in to do endoscopy he said quite definitively, “This is NOT a scleroderma esophagus” and when I saw Dr. F last week, he said “Do not worry about scleroderma, take a deep breath. I see no signs of SD”.

I think my autoimmune things *may* be trending somewhere else.

That said, I’ll call Monday morning and let them know about the blister like thing under the skin of the top joint on my left hand. That may change everything!

Thanks again so much for caring about me and for urging me to take action preventatively. I really hear you 🙂

I will try to figure out how to post pix.

[hopefulmama]

Found a way to post my hands for you:

http://autoimmunehealing.blogspot.com/2011/01/my-hands-jan-2011.html

This is my autoimmune healing blog that I started when I began this journey (and haven’t updated for a while).

I took pictures of both hands, and also the little blister thing under the skin of the top joint.

Hope this helps!

Maria and DAR, what do you think? Does this look like yours did?

[mschmidt]

A,

You have zero swelling in your hands, and they look completely soft and supple to me! As far as your mystery lump/blister–no, mine was in-between my fingers. But, your lump looks exactly like what the home health nurse w/Limited SD had on her hands, arms and chest–I guess what’s considered calcinosis. She had no skin tightening in her hands at all–just lumps scattered on the palms and fingers, as well as her forearms, and chest.

Regarding the herbal protocol for Lyme–I totally believe that herbs can kill the various co-infections, etc. I deeply respect Dr. K’s work, and protocols, as much as I do Dr. B’s. I think allergies are a BIG part of AI diseases to begin with because they can do SO much damage to the permeability of the gut tissue. And, reflux or motility problems certainly can be allergy related as well.

What was really odd for me was that the only skin that was truly hard on my body, from a “palpability” standpoint was my hands and forearms. I remember sitting in a rheumatologist’s office and having her do a skinfold test on my entire body. I could feel my skin burning underneath but, she said that my skin was soft and normal, everywhere but my hands and forearms. The 1st time I saw Dr. F, he said I had a huge mouth but, I know what my mouth was like, and even though it may not appear small to people, I can notice that I’ve lost some width. He even measured me the last few times I was there, and from top to bottom, I’m 7+ cm. It’s so hard to describe because the tightness I had was subcutaneous–I could “feel” it underneath my skin, even though you could easily pinch my skin. Does that make sense? Maybe I caught it in time before it tightened, and in that case, I’m extremely lucky. My mom and my husband are the only ones that understand what I’m describing because they both have touched my skin enough over the last 10 years to know what “normal” is for me. My husband massaged my skin when I was really sick, and said that he could barely touch me without me crying in pain. My mom stayed with me for a month a few times when I was sick as well, and she said that my skin felt tight deep, near my muscles. The crazy thing is I’ve never had loose skin, because my body fat has always hovered between 10-15% most of my adult life, because of my workout regimen.

I feel better knowing you’re being monitored by an LLMD and AP doc, and are proactive and “aware” of your body. That will serve you well, no matter what happens.

Maria

[richie]

Hi—I am certainly not a doctor but no way do those pictures show scleroderma hands !!!!!!!!–Way too many wrinkles –your fingers would be shiny and tight with scleroderma –Contractures in scleroderma hands are caused by the tendons stiffening and the skin tightening –the bump in your finger does look like calcinosis

---

This is not to say that the fingers might not contract but it could be from other illnesses {{{lupus }} for example —-rely on Dr F. –hes super —
richie

[aynurrzepa]

Hi,

Could you pls tell more about drops for mycoplasma from raintree nutrition?

I hope DAR and Maria will be able to comment on yor pictures – I cannot. My hands look differrent. They are not too bad but definitey sclerodermic (not fleshy, hard to touch)even with fingertip pitting scars and periodic ulcerations (which is not too horrendous by the way or maybe mine are really mild). My Raynaud’s is not typical either. I never have the 2-3 phases. From normal it goes to purple, sometimes fully, sometimes mottled, with no pain or numbness and then back to normal as soon as they are warmed. Stragely, iget attacks only hwn cold from within. Holding a glass of cold water or an ice cube or even being out in the frost doesn’t trigger attack. Also, I never get blanching. Strange, how we all differ!

Are your toes affected?

Take care and wish you to find all your answers at the soonest!

[quilter]

By now you probably have this all figured out! But I do want to say that I am so impressed with your pictures of your hands on your website. I’ve had a little area like that on my third finger in the same spot but I’ve had it for years. Your fingers definitely show that you have arthritis in them. I’ve found that massaging my hands with bag balm, which has quinine in it, daily keeps my hands healthy. When my hands get dry they feel tight! My hands get tingly when I’m on the computer too long. But the arthritis in my hands is arrested! (And maybe it was the minocycline that arrested the arthritis?)

If you haven

Dancing feet are Happy feet!
Nov 2007 Raynauds, Jan 2008 Carpal tunnel, Aug 2008 Rotator cuff, May 2008 MCTD, July 2013 H.Pylori, Aug 2015 Vaginal Atrophy
Medications: Minocycline 100 mg MWF, Low Dose Naltrexone 4.5mg, Acidophilus 1-3 a day, Estradiol patch
Vitamins etc.: Vitamin A, Vitamin E, Vitamin D-3 1000 IU a day, Aspirin 325 mg, Magnesium, B6, B12, Beta-carotene, Cranberry, Garlic, Multi Vitamin, and Glucosamine & Chondroitin with Boswellia & Manganese, & MSN, Grape Seed Complex, Meta

[Maz]

@quilter wrote:

I’ve found that massaging my hands with bag balm, which has quinine in it, daily keeps my hands healthy.

Hi Carol,

It’s very interesting to hear how well you did with bag balm, containing the quinine. This is an anti-malarial agent, similar to hydyroxycholoquinine (plaquenil). My mother-in-law in England was told by her rheumy to drink tonic water, which also contains small amounts of quinine. She has both ankylosings and psoriatic arthritis (on conventional meds) and swears by her tonic water! Maybe if you substituted the brandy for a good ol’ gin and tonic it would have good effect? Only joking! 😆

[Author]

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