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Still frustrated with pain


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#1 truman

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Posted 02 October 2007 - 12:15 PM

After 16 years of raynaud's (a major symptom), I've developed calcium deposits and limited agility of my right arm from the elbow down to the wrist. Skin is as tight as a drum in this area. The ring finger is a constant hue of deep purple and shiny prone to ulcers. My main concern at this point is my large toe on my right foot. A lot of skin peeled off today, in between the ultimate pain, and I'm just assuming it's dead skin that needs to come off. All this due to an ulcer from Raynauds. Four months and counting on this one. Getting extremely tired from the pain, sleepless nights, long days at work and returning to extreme pain at night again. Seems basically my right side is affected. I'm seriously considering amputation of this toe as a welcomed relief to this pain. I honestly cannot ingest enough cocktails to dull this overwhelming pain. Give up smoking now, not in a heartbeat. The pain is just too outrageous and I refuse to ingest any more than 9 pills a day.
Tru

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

#2 jefa

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Posted 02 October 2007 - 09:17 PM

Hi, Tru. I know you must be frustrated after four months of agony, but you make a couple of points here that should be addressed. Alcohol may seem like a handy and quick analgesic, but it is really not good for you. It can disrupt sleep, cause heartburn, induce Raynaud's attacks and interact with medications. Anyone with Raynaud's should not be smoking. Before cutting off that toe, make a commitment to yourself that you will take charge of this disease in all of the ways possible. Please quit smoking now. Don't depend on alcohol for the pain. There are several members here who have talked about how important it is to get rid of both of these habits. I hope they will speak up with advice on how you can get the upper hand with your fight against Raynaud's and its effects.
Warm wishes,
Jefa

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#3 Katherine

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Posted 03 October 2007 - 01:03 AM

I agree , you need to stop smoking and drinking . You should go see your doctor and fill him/her in on whats going on . Theres a wonderful pill out , that helps with the smoking . And one for sleep also. Without some treatment on that toe and some restful sleep at night , I fear you'll be missing some work and (been there ) CRANKY comes to mind, which will increase the pain.

Katherine

#4 Sam

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Posted 03 October 2007 - 02:21 AM

I see that you mentioned that you were going to quit smoking, that is great!! Yes it is very hard but you will notice a different soon. I use to smoke up two packs a day and I do miss it but not the smell. I can actually taste my food and drink now.
I'm sorry to hear you are in pain with the ulcers I have had only one and I know I thought I was going to die it hurt so much. I too thought if they could cut it off I would feel so much better. But they didn't.

I too have calcium deposits on my forearms the one does bother me more then the other, will have them remove eventually but I'm not good about having surgery, I had some removed onmy right knee about three years ago, so far so good ..

Well you take care and keep us informed what is going on, Sam
Sam

#5 bookworm

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Posted 03 October 2007 - 06:17 AM

Hi Truman,
Had you really rather lose your toe than take one or two extra pills, probably temporarily? How many toes are you willing to lose? (because you undoubtedly will get another ulcer, if not on another toe, then on a finger.)
I don’t know what medicines you are currently taking, if any, but it seems to me that your doctor is not addressing your condition or your level of pain. It doesn’t matter whether or not you like him or that he is well intentioned. He still may not know much about treating these ulcers.
If I’m not mistaken, the ulcers are caused by vaso-restriction. In other words, the vessels tighten up and not enough blood gets to the extremities, such as toes and fingers and, sometimes, elbows. If the doctor can somehow open up those blood vessels and let blood get to that toe, it may start healing. There are a number of ways to do this but not all of them work on everyone every time!
When I had a bad, and hideously painful, finger ulcer, a pain management doctor did a procedure on me called a ganglion block which caused blood to go to the finger tips of my left hand, where the ulcer was located. I was also given a pill, Norvasc, which may or may not have helped with blood flow.
This was before Viagra and Cialis were being used for this very purpose and now these drugs have done miraculous things for people for whom nothing else was working. (like me!) Is there a reason that your doctor doesn’t at least try one of these drugs on you?
Someone on this board said their doctor told them that if an ulcer isn’t getting better, it’s getting worse. Yours certainly doesn’t seem to be getting any better.
I’m not going to nag you about smoking. You know that every puff constricts blood vessels. Right? So, you have the picture and it’s up to you to decide when to quit. I smoked for over 40 years, so I know it’s hard, but I also know it’s possible.
As for drinking, that’s just a form of self medication. Why do you feel that’s okay but taking a pain pill isn’t okay?
All but one of my doctors wanted to amputate the end of my finger and I fought like mad to keep it! I was thrilled, after about two months of agony to be given pain relief so I could continue the fight to save my precious finger!! And I did save it! I am no longer on the very heavy-duty pain reliever that was needed for me to endure. It was a very temporary thing. So, I guess I just don’t understand your attitude about pain relief. It appears to me that if you continue as you are now, you will indeed lose your toe and it probably won’t be the last one!
As someone else said, you really need to take charge of your disease and insist on a change in your treatments, which obviously are not working. Is there a rheumatologist anywhere near you who specializes in scleroderma? You need help RIGHT NOW from someone who knows this disease. I hope you will insist on getting it!

Mary in Texas

#6 Sweet

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Posted 03 October 2007 - 09:00 AM

Hey Tru,

My heart aches for you. Constant chronic pain can drive a person insane! I'm concerned you may have cellulitis in your toe. Nothing to mess with - Forgive me for my poor memory, but has a doctor looked at it recently? The sloughing of skin throws up a red flag for me.

Are you on any skin patches for pain? These work as the primary source of pain relief and then you could take the pain pills for break through pain.

Please call your doctor.

Really worried about you.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 truman

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Posted 03 October 2007 - 11:59 AM

Sweet:

That was the diagnosis he wrote on the disability papers. It was getting better but after 3 weeks of antibiotics, it's going in the other direction. I sincerely feel I need to be off my feet for a month gain any benefit of a cure. We don't heal like "normal" people and I think he is just unaware of what is needed. I know he now treads lightly and is extremely attentive to my needs. I think there is a fear in him as well as he is unfamiliar to the disease. I am seeing him again tomorrow and will ask about a longer disability leave to give myself time to heal. I was fortunate that today they allowed me to work from home.
Tru

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

#8 Sweet

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Posted 03 October 2007 - 12:08 PM

Tru,

I'm so glad you'll be going to the doctor tomorrow. A lot of time with cellulitis, oral antibiotics just don't cut it. Ask him about getting IV antibiotics. It will be a hassle to go into the clinic or hospital for them, but if it works - well then it's worth it.

Good luck,
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 truman

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Posted 04 October 2007 - 02:43 PM

Sweet:

I lost it when he walked in the room and began crying. He looked at it and said to discontinue the antibiotic. He said he agreed that time was needed. No more antibiotics, no more soaking, just let it alone. He prescribed two pain killers. One had a combo I'm algeric to (codine). Pharmacy said they'd take back and credit. general practitioner feels rheumatologist needs to step up and prescribe an antiflamatory as he feels this toe is an incident of my body attacking myself. In any event, he's got me on disability for two + weeks. Just spoke with HR and asked if I could be permitted to work for the two weeks at home. Will get my answer tomorrow. Don't feel the pain as harsh or harassing as usual tonight, maybe because I know they'll be rest in between. doctor said the peeling skin and decay was due to the infection and swelling over the past weeks. He feels I need to be OFF the foot to allow proper healingl

Just don't want to do the pain killers yet........so don't believe in taking them.

Thanks Sweet
Tru

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

#10 peanut

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Posted 04 October 2007 - 03:12 PM

I don't have pain issues myself but if I ever do I'm going to look into acupuncture. My best friend had fibro as a child, pain everywhere and she swears that acupuncture cured it. Today, she is so energetic, lively and healthy you would never believe she had fibro.

just a thought.
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#11 Sweet

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Posted 04 October 2007 - 04:17 PM

Tru,

Thanks for the update. I do hope that time will help - hang in there and keep us posted.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#12 barefut

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Posted 04 October 2007 - 07:07 PM

Truman,

I have to say I agree 110% with everything Mary has been telling you. I think you need to find another rheumatologist - one who is a scleroderma specialist.
I think Viagra is your cure. And I think you need to not be afraid of the pain killers. Alcohol is not going to do the trick and you may find yourself in another dangerous situation there.

I am worried about you too. You need to find better care right away!

I won't nag you anymore about smoking either. But I will remind you that caffeine is a big no-no for your Raynaud's too! Go decaf if you haven't already.

We all care about you Truman and want to see you get the best care. I'm sure your kids and your family do too.

Please take care of yourself and let us know if there is any way we can help.

Love,
Barefut

#13 truman

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Posted 05 October 2007 - 01:24 PM

Barefut:

Thank you for your kind words. Getting up this morning, the pain was horrendous but I turned on the computer, put my legs up and tended to my work and as of now (8:00 PM), no pain. I still believe it's the time off my feet in order to get past this.

I wish I had the time back with my boys, but since my diagnosis, they have left and have not returned voice or emails. I truly believe it's the fear they feel in dealing with the situation (like it's a cake walk for us?). I'm presently alone and fending for myself. In any event, I have a great support system of friends. What goes around, comes around and all thru my life I have been there for my friends who were at their worst. It's all about compassion, understanding, loving and humanity. That is so lost in today's society, but something I value highly and live by. What I see by this board, is the compassion and helping arms from all parts of the world come together, it brings tears to my eyes. I never knew such a huge support system existed before I came here.

Thank you Barefut and all of those affiliated with this site. You are a dream come true, a reality, a fantastic support team, friends and definitely family!
Tru

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