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#1 Mercedes

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Posted 08 January 2011 - 02:50 PM

I am sending a query for my mom who has lived with scleroderma for 40 years with mostly digestive system involvement. She is 81. The past year she has felt like her body has been on fire. It's been getting progressively worse. Her internal temp is always normal. Her skin heat makes her miserable all the time-like a perpetual hot flash with no respite. Has anyone heard of anything like this? Help!

#2 annkd

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Posted 09 January 2011 - 05:29 AM

Hi Mercedes -

I, too, experience an internal heat that feels like I'm on fire. It isn't constant like your Mom's. I've been living with this for two years and none of my doctors can figure it out. All the appropriate tests have been run and nothing comes up. I don't run a fever. I hope someone here will have some ideas. When this "fire" comes on I tell my friends and family members that I am having a "flare-up" and then I excuse myself until it calms down. It can come on for an hour or for a few days. Very frustrating as I can imagine for your Mom. I know it isn't hot flashes - been there, done that! Let's hope that this mystery can be solved. -

Ann.

#3 Joelf

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Posted 09 January 2011 - 06:23 AM

Hi Mercedes

Welcome to these forums to you and your mother!

I'm so sorry to read that your mother has been experiencing such an unpleasant symptom; it must be very distressing for her.

I haven't thankfully experienced the skin heat that you describe so unfortunately can't advise you from my own experience. I would suggest, however, that your mother consults her doctor/rheumatologist and explains the position to him/her. We have a useful list of Scleroderma specialists should you and your mother wish to consult one.

Please do post again and let us know how your mother is getting on and whether she has been able to resolve the problem. :)

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#4 Mercedes

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Posted 09 January 2011 - 07:19 AM

Hi Ann, thank you for responding! Even though my mom has had scleroderma for 40 years, the past 20 years have been a real ordeal for her as she has struggled to cope with an ever-deteriorating digestive system. She has been exclusively on TPN intravenous feeding for 14 years (through surgically implanted Hickman catheter near her heart); She takes nothing by mouth, except water occassionally. Her bowel and rectum have also been surgically removed because she had no gut motility and would experience pseudo blockage all the time. In the past year her heart/lungs have become compromised by the TPN fluid. So we are playing a daily balancing act between too much fluid in heart and lungs, and dehydration from diuretics to remove the fluid, and giving her just the right amount of TPN fluid to keep her calories consistent. Yet, she has been a trooper through it all and has NEVER, I repeat, NEVER complained! She is as sharp as a tack and a wonderful, sweet, kind, giving person who seeks to comfort others though she herself is suffering.

Now the constant skin heat made worse by the fact that she cannot sweat. We are so frustrated with her doctors downplaying my mom's suffering with the constant skin heat and the unwillingness to do research to get to the root cause. They like to say, "oh it is probably scleroderma" (in effect they are saying to her "just live with it because we don't want to exert any effort to investigate this further"). If it were their mom, or if it were somebody "important" like the president of the United States, they wouldn't be so quick to write it off. Sorry, I guess I am just venting right now. She is so hot that she gets chills and her body trembles and she has to cover up in blankets to stop from trembling. It is the oddest thing! So really, her quality of life is greatly diminished because she has to lie down under blankets most of the time because she is hot, trembling and feeling weak. It's wearing her out, frankly. So, I am looking to others with scleroderma to determine if there are any similar heat experiences and what, if anything, can be done to provide relief. Hope to hear from others. Thanks for listening.

#5 Jeannie McClelland

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Posted 09 January 2011 - 07:53 AM

Hi Mercedes,

Welcome to the Forum. Thanks for posting on behalf of your mother. She sounds like a really wonderful person and I'm sorry she's had such a rough time. It must be hard on you to watch.

The heat thing sounds awful. I'm no doctor, I'm not even qualified to dust the bookshelves in a medical library, but I wonder if it couldn't be caused by some form of peripheral neuropathy? It can cause both the sensation of burning and the inability to sweat. As I understand it, because of damage to the peripheral nerves (outside the brain and spinal cord), incorrect information is relayed to the brain and an incorrect response is initiated by the body.

I can sympathise with your frustration with your mother's doctors. As much as they would deny it, I do believe factors such as age, sex, underlying medical conditions, and the amount of time/effort needed to diagnose a problem that may be difficult to diagnose and/or treat effectively do influence most doctors. Something that may make a patient exceedingly miserable but isn't life-threatening might well take a back seat to more critical problems. If you are the patient (or caregiver), it's a wretched situation with no easy answers.

Hang in there and come and vent anytime you want. In the meantime, I'm sending both you and your mother warm hugs,
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#6 Amanda Thorpe

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Posted 09 January 2011 - 08:37 AM

Hello Mercedes

Please tell your mother what an inspiration she is to those of us with scleroderma to have lived so long with it. It may have taken its toll on her body but it's not taken her even after 40 years. It is possible to live a long life with scleroderma!

Take care and keep posting.
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#7 enjoytheride

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Posted 09 January 2011 - 09:05 AM

Mercedes, I'm sorry that your poor mom has this awful problem. I have never had anything like it except for the non-sweating part. That was resolved for me with an large supplement of vitamin D as my levels were so low. But during that time, I could not get warm, unlike your mother. I did feel weak.

The only reason I mention it is due to her precarious nutrient situation. Has she had tests done to check the levels of vitamins and minerals?

I also feel you are right about doctors avoiding difficult symptoms, especially in older people.

I wish that doctors would have the goal of the best quality of life no matter what stage a person's health is. I watched my parent's long term doctors simply stop seeing them with the statement about how they could not help them further. In truth, they could have helped them stay comfortable even if they couldn't fix the problem. My parents were easygoing, undemanding patients.

Your mother is lucky to have you in her corner- I hope that you can get the answer to her problems.
(((hugs)))

#8 Shelley Ensz

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Posted 10 January 2011 - 08:43 AM

Dear Mercedes,

Welcome to Sclero Forums! I'm sorry your mom has suffered so many severe complications of scleroderma over the years. Please give her a nice warm hug, just from me, okay?

:emoticon-hug:

Scleroderma itself wouldn't be causing hot flashes, that is, as far as I know, and I'm not a doctor and have no medical training at all. I am just saying that I don't think it is either wise or sufficient to simply chalk it up to scleroderma, without thorough investigation into other possible causes.

There is a long list of possible causes of hot flashes (other than menopause), see Hot Flashes on WrongDiagnosis.com. You might also want to look at the list of possibilities for combing Hot Flashes and Cold Sweats on that same site. Some of the hundreds of causes range from comparatively 'harmless' things like panic attacks, to very harmful things, like cancer.

If I were in your shoes, I'd make an appointment for her with an internist, to cover only this symptom. Emphasize that you want to get to the bottom of this symptom, whatever it takes, and also that you want to explore all your treatment options, because there are treatments for hot flashes.

Also, many medications can cause hot flashes or night sweats (same thing, basically) as a side effect. So call her pharmacist and review all her medication to see if any of them might be the culprit.

You are definitely right that this should not just be chalked up to 'scleroderma' per se, or ignored. Take the time to focus only on getting to the bottom of this, not complicated by any other items on that particular doctor's visit. Also be sure to schedule a "long office visit" if that is an option at her clinic, because my guess is that this probably won't be very quick or simple to get to the bottom of.

Please keep in touch with us, and let us know how things go, okay?
Warm Hugs,

Shelley Ensz
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#9 Mercedes

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Posted 10 January 2011 - 07:05 PM

Thank you very much to everyone who responded to my posts. It is so comforting to hear from others who understand and truly care about the quality of life for another human being who is suffering. Tears of relief just welled up in my eyes as I read the posts you all made. So encouraging, so affirming, so emphathetic...and great suggestions!

My mom received her scleroderma diagnosis at the Mayo Clinic, Rochester, MN in the early 1970s. Most of her followup care including all of her digestive system surgeries (too numerous to mention) has been at the Mayo Clinic. For that, we have been very fortunate because we live about two hours from the Mayo Clinic. Now that my mom has become very fatigued and weakened mostly by the unrelenting hot skin, a two-hour trip is out of the question. So we have had to rely on the local doctors in Minneapolis/St. Paul (30 minutes from where we live). We are going to make an appointment with a rheumatologist but I have no idea how to go about finding one that has significant experience with scleroderma. Does anyone on these boards have any advice on how to source-out a rheumatologist doctor with scleroderma experience? And, yes, I definitely plan on making sure the doctor dedicates at least 45 minutes for the consult! Thank you all!!!!

#10 Mercedes

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Posted 10 January 2011 - 07:18 PM

Oh, and by the way, I have been doing a lot of internet searching and I think that my mom's hot skin problem might very well be the result of "anhidrosis" which is the inability to sweat. From the limited research I have done I found that anhidrosis can have one of many underlying causes, one of which could be peripheral neuropathy as someone mentioned in these posts or scleroderma among other things. Guess we have a tough road ahead trying to get to the bottom of this.

Shelley, thank you for the suggestion of looking at her meds as well. Just this past weekend, we had her doctor switch out her meds that have potential "heat" side effects: Prilosec, Hydralazine, with others that don't list heat as a side effect. We were told to give it a few weeks to guage whether or not this switch shows an improvement. Thank you!!!

#11 Joelf

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Posted 10 January 2011 - 08:17 PM

Hi Mercedes

I'm so pleased that you're feeling a little better about your mother's hot skin problem. My mother is also elderly and like your's, is always very stoical about her health problems and I can empathise with you about how very worrying it is when she's in such distress and there seems to be nobody that can help.

HERE's another link to help you find a rheumatologist that specialises in Scleroderma as sadly many rheumatologists don't really understand the complexities of this unusual disease.

A very special :emoticon-hug: to your mother!

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#12 Sandy B

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Posted 11 January 2011 - 03:18 AM

Hi Mercedes,

I have to agree with everything that has been said so far. Your mother really does sound like a very wonderful person, as do you for caring so much and you only get one mother so you really do have to treasure them. I lost my own mum on the 23rd December to pneumonia and it is her funeral tomorrow, so your post has hit a very raw nerve with me. I spent several nights at her bedside trying to keep her hydrated and comfortable, but her pleas for help will live with me for a long time. During the day there was so many staff on duty you couldn't move and at night only two as far as I could see. I can only say that had I not been there at night her discomfort and distress would have multiplied many, many times; in the end I had to plead with doctors for intervention because she was suffering so much. In this country (the UK) we do not let animals suffer in this way and yet because of cut backs we allow human suffering to go on and on.

Like others have said, tackle just the one problem and stand your ground, your mum does not deserve to suffer in this way if there is an answer out there. Sadly, often we have to become our own advocate, because to some doctors they have seen it all before and seem to become immune to human suffering.

Best of luck

Sandy B

#13 Sweet

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Posted 12 January 2011 - 03:43 PM

Hi Mercedes and welcome. I'm sorry about your mom. She might want to talk with her doctors about vasculitis which can cause some of the symptoms you are describing. Good luck.
Warm and gentle hugs,

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#14 queenie

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Posted 14 January 2011 - 03:39 AM

Hi Mercedes,

I too have heat problems. My temperature is always normal range but inside I feel so hot at times I have actually begun to physically tremble and feel sick with the heat ( similar sensation to convulsions in a baby with a temperature) only not being mentally out of it. I am fully aware and there is nothing I can do I have to just go with it and wait for it to pass. I too have had no answer from the medical profession as to why this happens. The good news though is that it was happening very frequently but the last few months it has only happened very occasionally. I did read somewhere once how true I don't know is that when you have autoimmune problems the thermostat in your body can get a bit mixed up now and again so maybe this is what is happening and hopefully for your mum it too will settle itself down.
Wishing you and your mum the very best
Take care :bye:

#15 Snowbird

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Posted 14 January 2011 - 02:02 PM

Hi Mercedes

I'm a little late on this thread and unfortunately, I can't add anything to help out but I see you have had terrific responses. I'm sorry to hear your mother is having such a difficult time. I agree as well, it's so good that you are there for her. I have no doubt you'll eventually get to the bottom of this for her. Good luck to both of you and I hope you keep us posted!
Sending good wishes your way!