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JohnJ

Hello, Newbie on board

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Hello everybody, my name is John and I am 46 years old, and a recent addition to the newly diagnosed club <_< I would like to take this opportunity to introduce myself and would like to tell my story, as it has been a difficult 2 years not knowing what was wrong with me until recently. I was an automobile mechanic for 30 years, always loved working with my hands, and took a lot of pride hot rodding cars and trucks, but that has changed dramatically because in November of 2006, while working on a customers car, I crushed my right index finger, actually more like strangled it cutting off blood flow. The digit had a crease mark on it and I thought nothing of it really, it hurt but it was a minor boo-boo in my opinion. Two weeks went by when I started noticing that the finger would be pale and then turn blue and would hurt a lot, then other fingers would exhibit this pattern, but they would clear up and I ignored it, not wanting to miss work. Well, in January of 2007 I couldn't stand the pain and went to see my primary doctor, and he about flipped out and sent me to get a doppler study which showed poor circulation. After that within 2 days I was in the hospital getting an angiogram. This confirmed I had almost no blood flow to the index finger and some occlusions in the hand. I was put on nefedipine, Viagra, and pain pills, and when I returned for the follow up the finger was turning black :o I was advised a partial amputation was in order and it was done. Well me and my stumpy couldn't get along very well because it didn't want to heal so on October 31 of 2007 a digital Rays amputation was done along with some sympathectomies.

 

This worked well until July of 2008 when my middle finger (my newly designated index) started manifesting the same Raynald's symptoms, along with my ring and pinky fingers :angry: So an ANA test was done and that came back a very high positive, and the florescence was speckled, so more tests were done and I have limited scleroderma (CREST). My middle finger was severely ischemic, and has developed a painful ulcer, the nail is coming off and it HURTS LIKE CRAZY! :( I don't want to lose another finger, and I am hoping they can trim just the tip, and kill the nerves or something? I recently lost my new job of 3 months because of this so I applied for SSD and waiting for them to turn me down <_<

 

I am grateful that it didn't turn out to be a more severe disease, but this has been quite a ride as all of you know I'm sure. I have some questions and hope some of you would kindly help me out with some answers if you don't mind. I plan on being proactive, but I'm having some trouble adjusting my life around this disease. I'm still going through the the mental stuff and get bummed out often. Well.. Thank you for your time and letting me rant. I hope you all are as well as can be,

 

Best Regards,

JohnJ

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Hello, John, and welcome to the ISN Sclero Forums. I am so sorry that you had to go through such a dramatic initiation to this 'club' as you put it. It is unfortunate that you had to lose a finger, given your profession and I hope you don't have to lose any more. It seems that you do have a positive attitude about it all which is a very important part of being able to cope. I see you have already been reading and posting in other threads. I look forward to getting to know you better. If you have any specific questions, please let us know. In the meantime, feel free to explore the Medical Pages which hold a wealth of information.


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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Hi There-

 

Welcome - and sorry to hear about your long ordeal.

 

I have significant Raynauds, but am lucky not to have had any new ulcers in the last 2 years.

 

Of all I've experienced, I'd say the ulcers were the most painful to experience. I always say - the three things that have brought me to tears in all this were (1) the ulcers (and mine were not severe like yours), (2) when fibrosis (tendon rub) hit my achilles tendon, and (3) the intense skin burning (I have diffuse form) before I got on the right immunosuppression drug.

 

Keep up the great attitude and I hope you find ways to keep from "bumming out" Music works wonders for me, as well as keeping informed (lots of information on this site). Also it has really helped me to meet others with this and other chronic diseases to see how they are coping. It is amazing how differently people handle pain and vulnerability.

 

I look forward to hearing more of your stories and experiences.

 

-RTS

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Hi John,

Welcome to the forums! I am glad you have found us here but I am so sorry that you are here because of sclero and raynaud's. I too have had ulcers but thankfully no amputations yet. Currently I have one on my middle finger(since June) and it just won't heal. The mental portion of this is very difficult to deal with. It does get easier as time goes on but it is something that you will need to learn how to handle. I was diagnosed 15 years ago and I still have pity parties for myself every now and again! Everyone has their own way of dealing with it. Find something you love, that you can still do and enjoy doing it. Don't stop living... don't let this beat you... fight it!! Be informed, educated and hopeful!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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John,
I'd like to join the others in welcoming you to the ISN forums. I'm sorry that your membership is due to a diagnosis of Limited SSc and that you have had to lose a finger during the onset. Based on your timeline of events, your diagnosis was relative quick which is a good thing. Some people take years to get a diagnosis. Kudos to the doctor that ran the ANA test to get you on your way to a diagnosis.

Are you seeing a rheumatologist or better yet, a scleroderma specialist? It does sound like you are seeing someone who knows about digital ulcers since you've already been prescribed Viagra. Viagra has certainly been proven to help, as well as many other treatments. Here is our link to the Digital ulcers page. It lists studies on several types of treatments. I hope the Viagra continues to work for you.

I can't add a whole lot more on the emotional part of the disease. You have already received some great input there. Yes, it is emotional and rightly so, but now that you know what you are dealing with, your new job becomes stabilizing it and making sure it goes no further. I have several part-time jobs. Two very important ones are self-managing my disease (being educated and informed as Lisa puts it as well as working closely with my doctors), and working as an ISN volunteer. Both of these have helped me to learn a lot about scleroderma and to deal with the emotional aspect of the disease so I can move on to live a normal and happy life.

Big Hugs,


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 John

 

You've aready been warmly welcomed so you are definitely one of us now. I like that in the face of amputation and ulcers you say it could have been a more serious disease, can't think of one myself though!

 

All I can say just over a year in myself is hang on, you're in for the ride of your life that goes down down down then up up up then who knows until it plateaus!

 

Emotional support can be found on this forum as there are so many people living day to day with different issues of the same disease, someone else will be able to relate to what you are feeling, will and have felt. Thankfully people here will openly share to help others. It's a great resource.

 

The medical information is first class also and there is a list of leading sclero experts for different areas worldwide.

 

Keep posting and take care.


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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Welcome John ~

So glad you found our wonderful forum! I can't add too much, only that I too suffer from Limited Scleroderma/CREST, and Raynauds... I've been hurting in one way or another most of my life, but not diagnosed officially untill recently. I've been very fortunate in not having any ulcers as yet, and hopefully will not any time in the near future. You sound like you already have a very good understanding of your situation, which is good. I am still learning and I marvel at the way others discuss their individual cases.

Keeping positive is the most important thing you can do for yourself. There are lots of great people here who can help you through your down times, just keep in touch.

Much love,

Nina (DE)

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Thank you all for the warm welcome, wow, I truly feel blessed to have found this site and all of you as well. I have been on the phone today with my kids explaining to them as best I can about CREST, as they are worried. After reading some of the stories on here I guess I was diagnosed rather quickly compared to most. As soon as my doctor mentioned Raynaud's I was on the net searching and learning, and I asked to have the ANA test done, and that lead to the ENA and the diagnosis.

 

I can't stress enough how important it is to speak up and ask questions and demand action when visiting your doctor, and learning all you can about this disease. At first I was bouncing from an Ortho, to a Vascular hand specialist, and I am currently waiting for an appointment to see the rheumatologist hopefully soon. All the doctors have put in referrals on my behalf. I lost my insurance in '07, so it was tough getting knowledgable treatment at first. The hospital I go to is great, and it's a teaching hospital so maybe they are attending to my needs because of the unusual disease that is in front of them? It has a clinic associated with it, and it has a good financial aid department, which I desperately need as I have been out of work. Lately, I was thinking that the Ortho who did the amputation and prescribed the Viagra, should have put things together and ordered further testing. But at the time it was being treated as a Workmans comp case since I got hurt at work. Maybe he thought if I was turned down by comp, he didn't stand to get paid? B) Although he and a plastic surgeon who saw me last week both think I have Hypothenar hammer syndrome as a result of banging my hand on automobiles for all these years, to go along with the CREST. What a strange turn of events. Oh well, one day at a time I guess. Hey by the way what do you folks use to protect your finger(s) from further trauma, I wear a half splint that has some cushion lining in it, but it is cumbersome. I would like to invent something that will insulate it better so I can work. Something along the lines of a rubber thingy that would be used for sewing or something like that! Any ideas would be appreciated! Thanks again.. Peace, John

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I wanted to welcome you! I suffer from Raynaud's but not as terribly as you do. I haven't had the finger ulcers yet and I am hoping to avoid them. I plan on staying in where it's warm this winter as even the slightest cold will set off an attack. I don't know what's worse...when they turn white and are cold or when they start warming up.

 

My advice to you now that you know you have sclero is to make sure you are doctoring with people who know their stuff when it comes to this disease. This disease can affect so many parts of your body and organs that you need to be doctoring with a team of doctors who stay on top of it. It changes from day to day and every one of us probably has different symptoms. I unfortunately have 6 different autoimmune diseases. I have systemic sclero, Sjogren's, Raynaud's, polymyositis, mixed connective tissue disease, thyroid disease and I also have peripheral neuropathy where my feet, hands and legs are numb. That was my first symptom was when my hands and feet started to tingle, then went numb, and then went to pain. It took a year of doctoring before I finally got in front of a rheumatologist who took one look and knew what I had.

 

You have come to the right place for support, answers, advice, and listening ears. Like I said, every day is different. The one symptom that seems ever-present for a lot of us is fatigue! It is terrible and takes so much out of you. There are some days when depression sets in and that seems to happen to a lot of us. Your life takes such a dramatic turn and becomes so different than what it used to be it takes some time to adapt.

 

I wish you good luck on your SSD. You should have no trouble as sclero is now listed as a disease that usually allows pretty fast action and approval. There have been dramatic changes in social security in the last 2 years on how they view sclero. I applied in December and received my first check in February. As long as your medical records are full of information backing what is going on with you and your diagnosis and your doctor makes good documentation on how this disease is running rampant in your body you will should be good. I applied online and it took a while. Then I had a telephone interview and that was it.

 

I hope you find out good news on your other fingers and don't lose them. Try to make sure you keep them warm at all times and protect them from cold.

 

Warm hugs,

 

Peggy

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Peggy, you sure are right about the fatigue. I have been noticing I feel more tired after doing things that would never have made me feel tired. I take vitamins, including fish oil and C. The thing I hate the most is not being able to use my right hand to fix things. Even opening a door takes cautious thought so I don't hurt it, if I do the whole hand turns white and it really hurts. I sure have made good use of my left hand as a result, I don't have any ulcers associated with it, knock on wood.

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Welcome to Sclero Forums, John! I'm very glad you found us...but sorry it's because of scleroderma. I'm very sorry you've had to have some amputations. I hope you are also able to consult a Scleroderma Expert, for the best possible care...especially, of your remaining fingers!


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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Hi JohnJ

 

You've already received such good advice, I can't really add more. I just wanted to welcome you as well. This is a great place with a wealth of knowledge in dealing with this disease. There is always someone who can help answer your questions. I also hope your Raynaud's settles down and you get some relief soon!


Sending good wishes your way!

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Your history of working with your hands is somewhat similar to my own with Raynauds. I was diagnosed with Raynauds 31 years ago (shortly after, CREST) at age 22 when I developed an ulcer on my right index finger. I was also engaged in work that put a lot of stress on my hands (rebuilding old player pianos). I don't think I would have had such severe symptoms at such an early age were it not for the hand stress. The lesson being to avoid tense, stressful hand use. If you go back to work, you may need a career with less hand stress. I think you're asking for trouble trying to find a way to use your hands for work.

 

This disease can be uniquely challenging for the male what with the "no pain, no gain" attitude. Its hard to just rest. Not just Raynauds, but also the fatigue issue. I've found it always troublesome to push things - just makes things worse.

 

Have you researched other medications? There are many old postings on this forum regarding the usefulness of different medications.

 

Some have found nitroglycerine cream effective (but not for me). The old alpha blocker Prazosin (Minipress) was a great help to me and a few others, though some found it ineffective. It is inexpensive. Everybody seems to react differently to the various medications.

 

Be wary of the use of steroids (i.e.- Prednisone). There are many dangers with this drug, especially with scleroderma, though some can't get along without it. This site has good info on that.

 

Your doctor may avoid some helpful medication out of fear that your blood pressure may get too low (vasodilators tend to lower blood pressure). This can be helped by getting a battery powered meter at a drug store.

 

Also, central warmth can be very important. No amount of hand warming is very effective for me without being warm all over. An icy drink on a hot day can lead to an attack.

 

Good Luck,

 

Craig

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Welcome John,

 

Sorry to hear about all the problems you have had with this disease. You have rec'd alot of great support and everyone here is just wonderful.

 

I too have raynauds and just recently started with some small ulcers. The tips of my fingers are somewhat numb so I don't feel the ulcers at this time. I can't see them either without a magnifying glass. I will watch them like a hawk.

 

Ask away with your questions and I'm sure someone will give good advice and direct you to information as some have already done. You can also rant away when you feel the need.

 

Take care.

 

Judy


A happy heart is good medicine.

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