JohnJ

Hello, Newbie on board

23 posts in this topic

Hi JohnJ.

 

Welcome and wow, you've been through the mill. I know about the pain of Raynauds, I lost the tip of a finger myself. Not amputated, but it turned black and took about 8 months to 'fall off". Luckily my doctor is a scleroderma expert and said I'm not a candidate for digital sympathectomies, (I have had several thoracic ones) because of lack of blood flow in my hands.

 

One thing I noticed in your post, you didn't mention any pain killers. Now, don't get me wrong, I'm not a big proponent of drugs, and you did say or at least indicate you have a high pain threshold, but those black fingers can hurt bad! I was on increasing doses of very strong pain relievers. Believe it or not you develop a tolerance and can still drive and go to work on those heavy duty drugs. I was a middle school teacher at the time.

 

It sounds like you may need to consider some pain relief. I'm sorry for what you went through and will go through, BUT it sounds like your attitude is good, and you know enough to ask questions. The most important thing you can do is research and understand your condition. Question everything, every treatment, every pill. STAY WARM. learn to wear a hat, (my personal cross to bear) :unsure: ALWAYS wear mittens or gloves. Get some of those hand warmers that hunters use, you can buy them in bulk pretty reasonably at one of these warehouse places. Stick them in your pockets all the time.

 

I'm sure you'll learn and hear lots more tips. Good luck and again, welcome. You're in the right place.

 

Peace,

 

Karen

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JohnJ,

 

Sorry I'm late on responding to your post (I've had a busy week). I do want to welcome you to this amazing website where everyone is so encouraging and supportive. I must say I'm impressed with your upbeat outlook and how you're handling your symptoms. You have a great sense of humor and trust me when I say it will help you tremendously. I've had systemic scleroderma for ten years now. I still get Raynaud's in the cold so I make sure my hands are always covered with a good pair of gloves. I've been hearing that ski gloves are good. I'll have to look into that. I did lose a tip of my index finger and it hurt like crazy when it fell off and started healing. But I was so glad it was a small bit and I still have some fingernail left on that finger. Just be careful handling heavy things like your tools so you don't bang your hands or fingers. I used to get ulcers on my knuckles and would keep them covered with gauze. I would wrape gauze around the finger, not tightly, enough to protect and give it support. If you could invent a gadget or finger protector, that would be wonderful. That's how inventions begin.

 

Take care of yourself and welcome to our family!

 

Hugs,

Razz


Live well, Laugh often, Love much

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Craig- Regarding pain management, I steadily rose up the ranks by starting out with the typical NSAIDS, and then on to stronger stuff.I wish I didn't need this stuff but I'm learning to manage myself fairly well. And as far as work goes, I am trying to find something in my field, perhaps commercial sales, and some customer service/parts counter sales so I wouldn't have to turn wrenches or perform the physical exertion I had to before because that is out of the question. My mechanic days are regrettably over, But I could help you pick out the best brake pads for your application! I just received a call today from NAPA auto parts and they said to expect a call later in the week :rolleyes: Do you think that will cancel out my SSD application process? And if I get this job and it doesn't work out will I have to start the whole process over again?

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Thanks again to all of you for responding and welcoming me aboard, I plan on sticking around for sure as you all sound like a terrific bunch of folks!

 

Hey KarenL, I noticed you said part of your digit fell off! How in the world did you tolerate that. It must have been PAINFUL! How does that happen? Is it like waking up one day and there it is on the side of your bed or something? That is really freaking me out!!

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JohnJ

 

Regarding SSD - the laws are probably different between states, but you probably have to prove that you can't do any work, not just your trained profession. Your background gives you a lot of knowledge that could be used elsewhere, as you mention. If fatigue is a big issue, that may be a bigger problem for working. I'm trying to get partial disability because I've gone to working part-time, since I can't find the energy to work full-time.

 

There are finger protective products made - the ones I use are very expensive but work well. PM me if you would like the brand name. I've either used these or bandaged them to avoid hitting (or even touching...) a fingertip ulcer, as it can be so incredibly painful, especially when you're used to using your hands a lot. If I could avoid touching or banging ulcers, avoid tensing hand muscles and keep warm (all over - not just hands), the pain was usually not too bad. However, I only had it to the point of getting fingertip ulcers, not blackened, gangrenous fingers. I take serious pain medication, but that is for peripheral neuropathy brought on by cancer treatment.

 

Good that you are accepting that you can't continue to be a mechanic. That will just kill your hands, while you yell every time you hit a sore finger (I speak from many a memory working on pianos). Even gardening, when I spend much time tensing my muscles holding a trowel, worsens my circulation.

 

Here are some medications that various forum members have reported as helpful for Raynauds:

Viagra

Cialis

Calcium channel blockers (Nifedepine, Adalat, etc.)

Nitro cream

Prazosin

Trental

 

You may have to get very insistent with your doctor. I've found far greater success when I take over being the doctor (so to speak), and do my own research. If your doctor resists this fire him/her and get another!

 

Craig

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John,

 

I completely apologize, I don't know how I missed you coming on board, but welcome to our family!!

 

It looks like you've received some great information and support thus far, so I'll just add my quick welcome!

 

I look forward to knowing you better.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi John,

I am a newbie as well. I had really horrible finger ulcers years ago. I did not know that I had a disease. I was a bartender and attributed them to "bar rot" as my hands were always wet. That was the only symptom I had. They went away and I haven't had any bad ones since. Although now, I have all kinds of symptoms. I am happy to have found this forum as well, people who know what I am going thru and have the same things going on.


~ Teresa~

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Hi guys I hope you are well as can be. I'm bumming today, I had to turn down a job offer because it consisted of putting furniture together, and carrying heavy appliances, and I can't go grasping anything like that without excruciating pain. I still have hope of landing another position I applied for at an auto parts store, mostly counter work, but I'm running out of time and the bills are past due. I am going to put my Mustang GT for sale online today and hopefully sell it to make it through the winter. I love my Stang, we've been together a long time but I am having trouble coming up with money to pay the bills and I also need 200.00 to see the Rhuemo next month. I'll work it out somehow. The pain in my fingers is really bad this morning and radiates up to my elbow. It's time to hit the ol pain meds. I wish everyone a good day.- John

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