miocean

Feeling Discouraged

10 posts in this topic

I need to vent a little today and what better place than here where I know you will understand...

 

For years I have been putting up with discomfort from calcinosis on my lower buttocks. There are many posts on threads about my continuing saga. For some reason the deposits are multiplying and the one painful area really hurts, not only when I am sitting but when standing, walking, and laying down. I have two spots that are near the surface and are right where the buttocks and thigh meet so they are in a crease. When I awaken in the morning the first thing I sense is a hot poker sticking me in that area. I have cushions on chairs all over my house to make them a little more comfortable.

 

I contacted two scleroderma specialists and have been told there is nothing that can be done. They don't know why calcinosis forms. They don't have a treatment that has shown to help it. The procedure for surgical excision is too dangerous for me with pulmonary hypertension and the high risk of infection, plus, after surgery they can come back. The studies that have been done are small with very limited success. I just don't understand why my doctors aren't willing to try something that is less invasive than surgery...

 

I am frustrated with hearing there is nothing that can be done, more so than being turned down for a lung transplant. This seems so minor in comparison, why can't they figure this out? I am in a study for calcinosis with my scleroderma specialist but all she does is measure it. I don't want to end up on pain medication, I take enough pills as it is. 

 

Thanks for listening,

miocean

 

 


ISN Artist

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Hi Miocean,

 

I agree, that must be very frustrating. Can you tell us more about the study you are in, and why all they are doing is measuring it?  Do you have any ideas on what you wish they'd try for you, short of surgery?

 

I have no problem treating pain if the cause cannot be remedied. I wouldn't even bat an eyelash over the thought, because pain can be such a horrible drag on the system, trashing sleep, worsening brain fog, inducing fatigue and inciting irritability.  You've dutifully sought permanent remedies to no avail.  It is at least partial treatment to try to ameliorate the pain, which is a bit better than nothing at all and could make this slightly more bearable to live with.

 

You'd probably have to be medicated into a coma for all the pain of it to be relieved, but maybe they could find something that would take the worst of the edge off?  I know that is hard to figure out as well, with all the other complications of scleroderma. All I can say is, it is not a "failure" to medicate pain, or any sign of "giving up", when the source of it cannot be eliminated. Rather, it is just another necessary treatment.

 

:emoticons-group-hug:


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 Miocean,

 

I really understand your frustration; it seems this illness is nothing but frustration. I have been looking for answers to my pain for years; the doctors just don't have an answer, just giving me stronger pain meds and when one stops working we switch to another.

 

Now I have a hard time staying asleep and have to move at night to stop the pain, but the pain meds do make the pain tolerable and make it much easier to function during the day to get done what I need to do.

 

:emoticons-group-hug: Maybe this warm hug will help.

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I am planning on asking the doctor about the calcinosis study on my appointment in early December. When asked if I'd participate I agreed knowing it would not include treatment but figured anything I could do to help scleroderma research I would.

 

In this NIH article, the most current I could find any information on, were the following treatments I am interested in:

Myo-inositol hexaphosphate (InsP6, phytate).

Extracorporeal shock wave lithotripsy (ESWL). 

Carbon dioxide laser.

Surgery:  I saw the surgeon who removed the calcinosis from my neck almost 10 years ago. After looking at the CT scan he noted the calcinosis is extensive and goes from my pelvic area down through my thighs. Surgery to remove it could be done one side or both at a time. It would involve 2 hours under general anesthesia, drains put in, 2 days in the hospital and a high risk of infection. I wouldn't be able to sit or lay on my back, I didn't even ask for how long because by then I was thinking no way. All of my doctors, including my pulmonary hypertension specialist have determined that this is too risky for me unless it is done in an acute cardiac care hospital with doctors knowledgeable about PH.

 

I was most interested in the myo-inositol cream, hoping I could get a prescription and have a compound pharmacy make it up. As I said, the studies are very limited and the success as well. I'm willing to try something, though. 

 

I have to admit between the pain, frustration, the time change, the weather getting cold, lack of sunlight, and missing my days sitting on the beach and staring at the ocean I have been in a bit of a funk. I don't seem to have a whole lot of energy, lack motivation, and am procrastinating. I have been using my "happy light" and it helps a little.

 

I hate complaining. I'm used to being the positive one. It's so discouraging to think that with everything I went through with the kidney and all the testing for the lung transplant what's getting me the most is pain in the buttocks!

 

miocean


ISN Artist

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Hi Miocean,

 

I'm so sorry to hear that you're suffering so much with the pain from Calcinosis. Ironically, it does seem to be the lesser problems of Scleroderma seem to often cause the most agony and discomfort and I can understand your frustration. Chronic pain is so wearing and debilitating.

 

I do hope that you will be able to obtain some relief from the myo-inositol cream and that things will improve and you'll start to feel much better.

 

:emoticons-group-hug:

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Miocean ,

 

I feel so sad that you're in such pain.  You've always been so supportive to everyone and it's just not fair.  I wish we could wave magic wands and make our lives pain free.  Like Sweet, all I can offer is a huge cyber hug and keep you in my daily thoughts. :emoticon-hug:

 

Also, since I haven't been on for a while, did I miss a post about your lung transplant....being denied?

 

Take care, Everyone.....hugs to all     :emoticon-hug:

Margaret

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Yes, Margaret, after a year of testing I was turned down due to esophageal dismotility, scleroderma, kidney transplant and skin cancer. I've decided not to pursue a transplant at another center right now because the last year was exhausting and that center is only 1-2 hours away. The third center would be a days trip there.

 

Fortunately I am doing well with oxygen for exertion only. Thanks for your kind thought.

 

miocean


ISN Artist

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Hello Miocean

 

I had started a reply to you but lost it when I fell asleep! Sorry! Don't be surprised that pain has such a grip on you, kidney failure might have killed you but pain kills your quality of life. 

 

Ask anyone and they want a quality life rather than a long one and especially if there is no quality at all! No one wants to live with pain but it is typically under recognised by the medical profession because it won't kill us and they focus on the stuff that will. If you have say lung problems and a digital ulcer that's infected and won't heal causing you great pain, what do you think they will focus in on during a 10 minute consultation?

 

Although we might have to learn to live with pain there are things that can be done to help and I suggest you get referred to pain management. There is no failure in taking pain medication especially if it improves your quality of life but they have other tricks up their sleeve. In the new year I am going to have a lumbar sympathetic block and expect good things from it. Basically they will inject stuff into nerves in the back and once proven successful for me, will repeat the process by burning the nerves and repeating as the nerves grow back. Clever eh? And yes I will be out like a light when they do it!

 

Please consider seeing a pain specialist 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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