Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Scalp pain?


  • Please log in to reply
10 replies to this topic

#1 Weasel

Weasel

    Bronze Member

  • Members
  • PipPip
  • 15 posts
  • Location:Near Seattle,WA

Posted 10 March 2011 - 04:41 PM

Hi,I haven't been in lately. We've been busy working on the house and I have hardly had time to go online.I am working the 10 hour shifts and after work I am so exhausted that I don't have energy to even go on the computer.I have been trying to find a different job with shorter days but there isn't anyhting out there right now.On the days off I have so much work to catch up on around the house because I never get anything done after work.

I haven't thought much about scleroderma and I haven't been back to see my Rheumatologist in quite some time. I've been to the kidney doctor a lot, because of my renal issues.The past couple weeks I've been having this really painful spot on my scalp by the left temple. It was swollen and hurt if I touched it.It kind of felt like someone was pulling my hair all the time. really tight, and felt like my skin was somehow stuck to the skull bone. I put different medicated creams that I had on it and some anti-inflammatory pain killer even though I'm not supposed to because my kidney. It finally stopped hurting but now I have an elongated indentation by the spot and it feels like a ridge on my skull and it seems to extend towards my left eyebrow. I still have a feeling of tightness there.The skin looks a little lighter than the rest.

I've also had a few hard bumps under the skin on my hands and I have one on my face. Some of them went away after a while and the one that opened up had whitish stuff in it, kind of looked like chalk and looked like some sort of ulcer. Now I am wondering if this may have something to do with Scleroderma? I have positive ANA and positive SCL-70 every time I get tested. Has something like this happened to anyone here or can anyone give me advice what I should do? Should I wait to see how it develops or should I go to the doctor?I hate going to the doctor, because I always kind of feel like a hypochondriac too, because it seems I am always there for one thing or another.

#2 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 10 March 2011 - 05:00 PM

Weasel, I am not sure by what you are explaining but it sounds a bit like:

En Coup de Sabre is a term used when linear scleroderma affects the forehead. It appears as an indented, vertical, colorless, line of skin on the forehead. The indentation looks as though the person may have been struck by a sword. You can read in our medical section on Linear Scleroderma and see if it may be similar to what is going on with you. Sorry to hear that you are getting behind in your household duties. We have all been there. Some days or weeks we go through extreme fatigue. The more tired we become the behind(er) we seem to get. Just do small jobs each day when you have a bit of energy. Many of the people have felt like they were being thought of being hypochondriacs but time told the truth for these people. Don't worry what your doctor may think. Tell him/her what you think or feel at any given time. Keep track of those feelings and how long you are having problems. Everything gets put into proper place eventually. Hope you start getting some of your energy back soon.
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 10 March 2011 - 05:31 PM

Hi Weasel,

Sorry to hear that you've been experiencing horrible pains on your scalp. Thankfully I haven't personally suffered with anything like that so can't advise from my own experience but I would certainly suggest that you should consult your doctor as it's obviously worrying you a lot.

I'm sure that you're not being a hypochrondriac and it is actually your doctor's job to help and reassure you, not make you feel that you're wasting his time.

I do hope you soon feel better; let us know, won't you? :)

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#4 Lynnie

Lynnie

    Silver Member

  • Members
  • PipPipPipPip
  • 173 posts
  • Location:UK HULL EAST YORKSHIRE

Posted 10 March 2011 - 06:25 PM

Hi Weasal

I hate to say this, but you should really make the time to see your doctor, namely your rheumatologist. If you have what Sheryl thinks you have it needs to be diagnosed and managed properly. I think if it's left untreated you could get into a real mess. You are as you say seeing the urologist about your kidney issues ask him to refer you to one if your not under a rheumatologists care, if you have one then I would be asking to see him/her ASAP to find out whats going on.

Life is busy, we all can vote for that, but,its important to consider putting you and your health first, housework can wait, pace yourself!

I do hope you find the answers you seek and get the help you need.

Hugs and warmth,

Lynn

#5 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 11 March 2011 - 12:39 PM

Hi Weasel,

I agree with Sheryl and all. It is time to see your doctor and hopefully a scleroderma expert. What you are describing resembles en coup de sabre (which is a localized form of scleroderma that typically affects just the skin and not the internal organs), and also calcinosis (calcium deposits) which can occur by themselves or with any form of scleroderma (systemic or localized). Certainly, there is no way on earth we can diagnose anything via the Internet -- and especially, because none of us are doctors! So the only thing you can do is go to the doctor, and with the scalp issue, I'd say you should see a listed scleroderma expert.

: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.

#6 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 11 March 2011 - 12:53 PM

Hi Weasel,
You received good advice from everyone. The only thing I will add is don't do anything to mess with your kidney function!

:temper-tantrum:The last thing you want to do is go on dialysis, take it from me. :temper-tantrum:


miocean

ISN Artist

#7 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 11 March 2011 - 12:55 PM

Absolutely, weasel...PLEASE get in to see a Rheumatologist/Scleroderma expert as soon as you are able.

Should the doctor feel you should then see anyone else, that doctor will then advise you.

Please keep us posted on how you are doing?
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#8 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 11 March 2011 - 05:28 PM

Hello Weasel

I don't have much to add other than to echo Miocean's plea that you do not neglect your kidneys' and Shelley's suggestion that you see a scleroderma expert in view of the new symptoms. I know that when you are tired everything is a huge effort but following up wit doctors is one that's so worth it.

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)

#9 Weasel

Weasel

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 15 posts
  • Location:Near Seattle,WA

Posted 15 March 2011 - 03:04 PM

Greetings,

Thanks for all your input and responses.By today, my scalp issue has resolved to just a slight indentation and light discoloration of the skin.The pain is gone.I know I deserve getting chewed out for taking the Ibuprofen and I am usually very careful and don't take it or anything else I am not supposed to.But it hurt and I had to work 10 hours and Ibuprofen was the only thing that actually helped. Unfortunately Tylenol doesn't work for me at all. I had a CT scan of the kidney yesterday and I have an appointment with my kidney doctor on the 27th and I will talk to her about the scalp thing and see what she thinks about it.She knows that I have been seeing the rheumatologist because of my positive ANA and SCL-70 but she thinks that I don't have scleroderma or any other autoimmune problem (he doesn't think so either because my hands look okay).He just wants me to come in every 6 months to repeat the blood tests to see if they change. She thinks the changes in my only kidney are from hypertension.

I did seem to have a Raynaud's attack awhile back but it wasn't on my hands but instead I had my feet turn completely white and numb when I was pressure washing my deck and they were exposed to the very cold water. Another thing I noticed that for at least the last 6 months I have been having this dry cough that's not going away.I thought it was from the Lisinopril I take for my hypertension, but read in another post that it could have something to do with lung involvement. Which reminds me about 8 years ago I had to go for a lung scan because I was having breathing problems and they told me that it showed vertical lines in my lungs which I thought was because of a bad x ray film and the doctor never followed up on this. I also have horrible heart burn most of the time and I have to cough a lot after I eat like as if I am not swallowing my food right.I have mentioned this to my rheumatologist before but he was only interested in what my hands looked like . He did a test for inflammatory markers and said that they were all fine which I thought was weird because just a week or so before I saw him I had a horrible gout attack in my toe and it was so inflamed that I couldn't bear for the bedsheets to touch it.

I'll let you know if I find more answers after my doctors visit.

Thanks you again and until next time,
good thoughts and strength to all

#10 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 16 March 2011 - 12:35 PM

Hi weasel,

Yes, you were right in thinking you might get chewed out about taking Ibuprofen, especially with your kidney issues. However, I can certainly understand Tylenol not working in this respect, as it doesn't for me either.

Though I'm glad your scalp pain has ebbed, it's disconcerting that your concerns of your (other) symptoms are being dismissed by the doctors that you have seen.
Is it possible for you to seek out a different rheumatologist, by chance?

You spoke of heartburn and coughing...are you taking any prescribed medication for the heartburn? You may want to make an appointment with a gastroenterologist, because though I'm not a doctor, you may have issues that need to be addressed before your symptoms worsen.

As I'm sure you already know, it's important for you to guard your feet/hands against cold temperatures, as you found out with their exposure to the cold water while you pressure washed your deck.

Thank you for keeping us posted and I will be anxious to read how your doctor visit went.

Take care and please don't give up on doctors as there are many out there who are truly awesome and DO know what you must be experiencing.
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#11 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 16 March 2011 - 03:48 PM

Hi Weasel,

By any chance did you have a head injury? En coup doesn't really come and go or clear up quickly. It is more like a permanent condition, unless significant and long term treatment is successful. If it is clearing up quickly, that particular thing might more likely be due to injury.
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.