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Did You Get Relief?


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#1 bookworm

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Posted 13 September 2007 - 06:07 PM

Hi, Barefut,

On August 14, you started a thread called “Nitroglycerin For Raynaud's, Finger not getting any better.”

It turned into quite a long thread! I am just wondering now whether your finger ever did get any better. You may have popped back in and told us, but I missed it.

I am hoping that some of the suggestions you got may have worked.

Mary in Texas



#2 barefut

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Posted 14 September 2007 - 12:23 AM

Hi Mary,

Yes, thank you! My finger is better. It is still the first one to go blue and I have to baby it but what looked like broken blood vessels just under the tip of my nail has cleared up and the hard skin on either side of my nail has softened. There is still discoloration on one side that looks like a blood blister - like I was pinched but it is smaller than it was. Thank goodness it never turned into an open ulcer!

My right middle finger must have gotten jealous of all the attention my left middle finger was getting because during that time, I had a calcium deposit work its way out of him! :lol: It's just a dry scab.

I used the nirto paste for about a week until it started looking better. I am still going to ask my rheumatologist about viagra or its equivalent at my appointment on Tuesday.

I am amazed at the length of that thread. And grateful to all who shared their stories, as well as so sorry that any of you had to go through all that pain and disfigurement. I can't imagine what that was like for you all emotionally not to mention physically.

Thank you again for asking about me. I was going to add a last reply - eventually... :rolleyes:

Take Care,
Love,
Barefut

#3 truman

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Posted 15 September 2007 - 02:18 PM

I've had an ulcer on my big toe for about four months. My rheumatologist said to go to my general practitioner who looked somewhat freaked out and he sent me to a vascular surgeon. Now I know why the general practitioner was freaked. The vascular said there was a bit of gangrene on my toe but now to worry. He said to keep it clean and continue with antibiotics. I have to tell you, though the pain as decreased 80% in the past week, the remaining pain is enough to scream loud and hard. Sleeping is nearly impossible as the pain occurs between 6PM-2AM for whatever reason. Getting difficult to stay alert at work.
Tru

It is what it is...........

#4 WestCoast1

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Posted 15 September 2007 - 05:27 PM

tru that sounds awful. I am hoping that your toe clears up QUICK!
*WestCoast*

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#5 bookworm

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Posted 15 September 2007 - 08:49 PM

Tru,

What are you taking for pain? It took me at least two or three months of trial and error, but I finally was sent to a pain management clinic and there, for the first time, I was helped with the pain. They did a procedure that helped get blood to my finger tip where the ulcer was located, and they immediately prescribed a different narcotic drug that was even stronger than the ones I'd already tried and which didn't work. They also prescribed amitriptaline (sp?) which was supposed to help with sleep. It did.

My bad ulcer, with dry gangrene, was several years ago, before sclero specialists began using Viagra and Cialis to prevent this problem. The next time I began to get a finger ulcer, my rheumatologist immediately put me on Viagra and that one healed up in a week or two. The bad one had taken about a year to heal and the gangrene ate off the end of my finger.

Are you taking Viagra or Cialis? If not, I recommend you ask your doctor about it. If he/she is unfamiliar with this treatment, perhaps it would help if you took him/her an article from this site.

There were signs all over the pain management clinic that said, "You have a right to pain relief." I agree. I couldn't function at all with the level of pain I was having. I'm sure you know what I mean!

Mary in Texas

#6 barefut

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Posted 16 September 2007 - 05:42 AM

Mary,

What were the first symptoms of your uclers? Did they come on quickly?

Do the symptoms that I mentioned about my finger sound like the start of an ulcer?

ie: blood blister looking discoloration on the skin on both sides of my nail, near the tip and what looked like blood vessel damage just under the tip of my nail. The skin on the sides of my nail became hard and it hurt when I pressed on it.

Thanks,
Barefut

#7 truman

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Posted 16 September 2007 - 09:39 AM

That's the beginning of the ulcer. I'm going to my general practitioner on Tuesday for a follow up and will voice the suggestions of viagra to him as he seems to be more pro active than my rheumatologist. As of today, the pain has subsided, but I'm beginning to feel it slowly inch in. This ulcer has too, ate away a piece of my toe but looks as if it's drying out and slowly scabbing up.
Tru

It is what it is...........

#8 bookworm

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Posted 16 September 2007 - 12:34 PM

Barefut,

The really bad one started as a tiny dot of red right next to my nail. From the start, it was very sore. It seemed to get more painful and larger each day. I don't remember thinking that it looked like a blood blister, and I don't remember skin discoloration or hard skin. This happened three or four years ago, though, so I may be forgetting details! It did come on very fast, and, it came in the wake of a very, very stressful event in my life.

I think these ulcers can be different from person to person, though, so I'd bet that that's what you've got, although I don't know.

I happen to have two more at the moment -- Yes in spite of the Cialis! -- but they are much different from that earlier one. First, they are located at the first joint instead of the tip and they are more like ordinary sores. They are not terribly painful, but they are not healing very quickly; They aren't getting worse either. I credit the Cialis for the fact that they aren't any worse!



Truman, when you see your general practitioner Tuesday, also ask about pain relief! Ask about a referral to a pain management clinic if you feel the pain is not being treated sufficiently.



Mary in Texas

#9 AmyTx

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Posted 16 September 2007 - 03:51 PM

i forgot to mention that eventually my doctor prescribed me emla cream it has a numbing agant for pain and I lived like that for 5 months until I went into a nursing home and I soaked my ulcers twice a day in warm salt water.. my rheumatologist says whats important is to keep them as warm as possible and even soaking my toes in warm salt water saved my toes I had dry gangrene on both but my toes healed and my thumb did not in a away im glad my thumb is now halfway gone because it doesn't hurt much anymore... so keep yourself warm warm warm...my doctors would rather have me sweating than cold.. I hope viagra works for ya'll now that my thumb is gone and my toes are healed I still soak them in warm water. I wish everyone a pain free day and hope this finds others well..

amy

#10 truman

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Posted 17 September 2007 - 09:36 AM

Up until yesterday, I felt relief and some sense of healing. Then work today. By the time I got home, there was oozing, pain and really nasty looking conditions. I mixed antibacterial soap and warm water and began washing the area immediately (ouchhhhhhhhhhhh). I have to go to work tomorrow, then the general practitioner. I know he's at his wits end, and can see his frustration but I know now that he knows it's my condition and not my inability to try to keep corrective measures. I think when he sees me tomorrow, he'll probably "freak" inwardly and take me out of work again. I feel in my gut, that he'll order me to a wound care facility, similar to those for diabetics. I so hate being shuffled around and consistently filling in new forms and information. At this point, losing the big toe would sound like a blessing, but I know in reality I must fight to keep what I have and do all that I can do. I did so well by giving up cigarettes at 11:00 last night, but by today's end, ended up getting a pack of cigarettes on the way home. Just so frustrating.......I miss my kids.
Tru

It is what it is...........

#11 barefut

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Posted 17 September 2007 - 09:53 AM

Oh Truman,

Hang in there buddy. If it's too hard to quit smoking without help, maybe try patches or gum.

I am so sorry you miss your kids too. Is there any way you can visit them or at least call?

Take Care,
You're in my thoughts,
Love,
Barefut

#12 bookworm

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Posted 17 September 2007 - 07:14 PM

Hi Truman,
I'm sorry you are having such a rough time right now. I hope you're right and your general practitioner does send you to a wound care place. They will probably turn things around for you! Really! At least around here (Texas) they seem to know what they are doing at the wound care places. Please do ask them for something for pain relief. Ask if they've treated sclero patients. Make sure that they know you are a sclero patient!
I'll bet that by this time tomorrow you are feeling a bit better and your mood will improve when you feel better.
As for the smoking, I smoked for 40 years, but I quit four years ago! I did it with the help of an online group called SmokeNoMore, which is listed on this website. It helped me quit and I've never been happier about anything else I've done! Smoking, of course, is bad for everyone, but for people who get these ulcers, it is just disastrous! It was easier to quit than I thought it would be. Perhaps that was because I'd just been in the hospital with a respiratory infection and felt I was getting a preview of what life might hold if I kept smoking!
Anyway, right now, you just stay focussed on getting rid of that ulcer. I know it's hard to be shuffled around, but keep in mind that it's a way of assembling a group of doctors who know what they are doing! You will drop some along the way because they don't know what they are doing. You'll be left with some you trust and know that they understand the problem. If you ever get another ulcer, you might go straight to the wound care center and not mess around around with treatments that don't work.
Please demand pain relief. Do some reading about pain on this site. And do take off work if you can. If you can break what they call the pain cycle, your whole outlook will be different. Living in pain day after day is very debilitating and is now considered to be a disease in itself! Some doctors haven't learned this yet, but it's the belief among pain management doctors and others who keep up!
Good luck and try to keep your chin up. Things are going to get better.

Mary in Texas

#13 truman

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Posted 18 September 2007 - 12:15 PM

Thank you so much for your concern, knowledge and kind words. I have never been one in drugs for pain. As long as I know the cause, I can deal with the pain. I rather relax in front of a re run of a good comedy show. Ah....to be twenty again........to change so many things. Thanks again for your support. :)
Tru

It is what it is...........

#14 truman

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Posted 19 September 2007 - 11:52 AM

Was in quite a lot of pain last night. Just couldn't sleep. Around 12 midnight I had to get up to relieve the pain in my toe. My dear cocker was laying close to the ground by me and I didn't see him in the dark. I stubbed my toe on him and began yelling and banging on the furniture. The pain was unbearable. He just ran and hid. I felt so bad for him, that despite the pain went to assure him it was okay. By 5 AM still pacing the house, I knew I was not making it into work AGAIN (have to be there by 7). I had enough work to keep me busy working from home for about a week, but somehow, I still sense an attitude from work that this is not appreciated. Tell you what though, I put in 8 1/2 hours of work at home today as opposed to the 6+ between breaks and lunch if I were to have reported to the bldg. Why can't management consider the benefit of those type of situations. I understand that there are many who take advantage and milk the situation, but I couldn't deal with myself if I were to take advantage of any person or given situation. When I called HR to say I was working at home, I began to cry. I hate being so weak, but I can't help my emotions at this time. I don't want them to get the impression that maybe "this one needs to go". I'm just alone, scared, hurting, confused and need interaction with others. Trouble is I hurt too much to do anything other than work, and that's become somewhat difficult as well. If it's not the IBS, it's the ulcers. I guess the real thing is unless you look "real" close, you can't tell I have a disease.
Tru

It is what it is...........

#15 Sweet

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Posted 19 September 2007 - 12:31 PM

Hey Tru,

Love, I am so sorry for the horrible night you had, and the struggle of emotions you are going through. It's so hard to really understand all of this ourselves, and even harder to explain to others. We want people to understand, show compassion, kindness, but it's not always what we get.

Have you seen the spoon theory? It helps sometimes for others to read it - to gain a bit of knowledge or insight into our health issue. Take a look at it. Print it and show it to others.

Did you get the FMLA going at work?
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#16 bookworm

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Posted 19 September 2007 - 07:39 PM

Hi Tru,
I'm sorry you had such a bad night last night. I'd think you might want to re-think your position on pain medications! With pain bad enough to keep you awake, you obviously don't get ernough rest and then you can't make it to work. And then you feel bad and you worry that your boss and fellow workers are not happy about you taking off. Rest, of course, promotes healing and that's what you want to happen with your toe.
After my husband had heart surgery, his doctor told us that pain relief was very important for his healing -- not just because pain hurts or because the doctor thought my husband was a wimp. He explained that if my husband didn't take his pain medicine, the pain would cause him to take more shallow breaths because deep breathing was very painful, but deep breathing was needed to get well and keep the lungs clear. He also said my husband wouldn't get good rest and sleep because of pain unless he took his pain meds. The doctor reminded us how important sleep and rest are in the healing process.
You said you were going to your general practitioner on Tuesday and expected he would send you to a wound care facility. Did that happen?
I can almost guarantee you that your toe isn't just going to heal on its own. You need some doctors who know about sclero and these ulcers. My finger ulcer didn't begin healing until I got some serious pain relief and proper treatments.
Believe me, I am not a pill popper ordinarily. On a scale from 1 to 10, with 10 being the worst pain, I'd rate my pain with that ulcer at least a 10. It got gangrene which was eating off the end of the finger. I have never had pain like that and it was the focus of my entire life. I couldn't have even thought of work or play or anything. I just hoped,each day, to make it through the day. I realize that pain is subjective and some people have a higher threshhold for pain. However, pain that wakes you and keeps you awake is bad pain by anyone's standards.
I'm afraid I just can't see the point of it if you can ease it. I immediately stopped taking the pain medicine as soon as the ulcer began healing. It was no problem.
You don't get extra points for suffering needlessly!

Mary in Texas

#17 truman

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Posted 20 September 2007 - 12:17 PM

Bookworm:

Wonderful, kind and good information from you. Weekend is coming. If nothing has changed, I will take you up on your recommendations. Began soaking in warm (not hot) salt water this evening and hit the roof again. After four months, I just can't take the pain any longer. Thank you for your thoughts. When I was upset yesterday, HR actually told my to get on line with my friends here. There are some who understand, some who deny and some who go the extra mile in instances like this. 1 in 30,000.........just don't get it, but got it.
Tru

It is what it is...........