Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Just need to talk


  • Please log in to reply
16 replies to this topic

#1 gigi08

gigi08

    Senior Bronze Member

  • Members
  • PipPipPip
  • 67 posts
  • Location:Pennsylvania

Posted 04 December 2009 - 05:49 PM

Posted Image I just need to write and share how I've been feeling lately. It's okay if no one writes back on this post but it gives me a chance to vent.

I was diagnosed with limited scleroderma in May 08. It took months of meds to get rid of the hand and wrist pain but that finally happened and I've been pain free in the hands and wrist. I still have swelling and ugly looking fingers but I can deal with that.

I've gone through many spells of just not wanting to do a thing. Part of me would want to but then there was the part that just said "you don't feel like it". I was tired. I was off and on with steroids. While on, I usually felt pretty good; while off, the symptoms would come back.

I've also experienced the swollen knees. When on the steroids they would feel pretty good but when off, they swell right back up. I've also been experiencing this tingling, pulsating feeling, and achiness in my legs and feet which my rheumatologist put me on meds for it but hasn't helped yet.

The past month I was starting to feel really good mentally and feeling like I really wanted to do something again and was able to do a few things that I hadn't felt like doing. Then, last Friday I got really bad low back pain. Since last Friday that pain has started to radiate into my right hip and now it is going down my right leg to my calf. I have been to the chiropractor twice this week and today I went and had myself a massage.

On top of all of this, I started getting a sore throat (which only lasted one day) but now I've lost my voice. Today has felt like a wasted day for me because when I stand, the pain in my leg is worse, so I don't feel like doing anything.

I don't want a pity party and I know that there are many of you that are in much worse shape then I am. I just get so aggravated because I can't stand to sit. I like to be on the go. I used to love to exercise and for the past year it has been a really big challenge for me to do that. Another thing - I hate popping pills, now I'm the pill popper and some of them just don't seem to be helping with what they're suppose to. Okay, that's all I have to say for now. It's just felt good to write it. Posted Image
Gigi08

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,275 posts
  • Location:Minnesota

Posted 04 December 2009 - 06:01 PM

Hi Gigi,

I know how you feel; sometimes I feel very much like that myself. I bet you even feel a bit better now that you've let it out?

Here's a great big warm hug for you. :emoticon-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.

#3 amberjolie

amberjolie

    Silver Member

  • Members
  • PipPipPipPip
  • 197 posts
  • Location:Ontario, Canada

Posted 05 December 2009 - 02:34 AM

This is the best place to vent because I'm sure everyone here has felt the way you are feeling, regardless of how severe their symptoms are. I also like being active, but I've been SOOOOO tired lately that it's really hard to get the motivation to do anything. And like you, I hate taking medications. I have sore fingers and wrists as well, but I've declined any medication so far. I think I'm just waiting for it to get worse before I go that route, but I'm guessing eventually I'll have to.

I'm sending you :emoticon-hug: too!

#4 ladyhawke

ladyhawke

    Silver Member

  • Members
  • PipPipPipPip
  • 120 posts

Posted 05 December 2009 - 03:59 AM

Hi Gigi
Man, I so know how you feel right now.....I had pain in my lower back and one hip then it went to both hips. I tried everything, chiro etc etc. I bought a heated mattress pad cover and that helped a bit, but then my general practitioner told me to start taking an ibuprofen every day. I take it about an hour or so before bed time and I'm telling you, it worked!!!!! She said I could just keep taking it and I am. I go to bed now and my back and hips don't bother me at all. So if you can take ibuprofen give it a try. My sister can't take it, but she takes a tylenol at bed time as she was experiencing the same thing and that has worked great for her as well.
I wish I could just reach through here and give you a big hug. It feels like everything comes down on you all at once. But keep looking for the light, it's there, it just gets a little dim at times. love & Hugs :flowers: - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#5 debonair susie

debonair susie

    Platinum Member

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

Posted 05 December 2009 - 07:15 AM

Hi gigi, Shelley, amber and Lisa,

It does help to vent every once in a while...It's like a rigorous game of racquetball (which I can no WAY play anymore) :girly1-by-lisa-volz:
Special Hugs,

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

#6 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 05 December 2009 - 11:44 AM

Hello Gigi

I am now into my 3rd year and I feel worse now than I did last year! My mobility is better but the fatigue is worse. Remember you have only had sclero for about 18 months so it could still have a long way to run. Don't be so hard on yourself.

It's the unpredictable nature of it that's the problem, you never know how you're going to feel and if you do feel well how long it will last. I have changed my expectations to help minimise frustration and disappointment. I accept that I am not going to wake up one day and feel like I did before I had sclero and be able to do anything I want. I could have another 2 years in which the disease is active so I can't really expect to hit an even keel anytime soon.

Horizon adjusting involves a honest assessment of what I can do rather than focusing on what I can't. The can do list may be very small but it's a positive rather than the negative can't do list that's as long as your arm!

Venting is great, it enables us to release the negative so we can then focus on the positive and there are lots of positives. Remember we don't live in the ordinary anymore, where people trundle off to work everyday and come home to do domestic chores and cook meals. We live in the extraordinary where cooking a meal or doing some chores is a breakthrough and the hallmark of a good day and we know a good day when we see one because we know the bad it's compared to.

Be patient there's a good day :happy-day: waiting for you around the corner, I just know 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)

#7 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 05 December 2009 - 12:12 PM

We all understand how you feel and why you feel the way you do...so I say go ahead and have a complete venting hissy fit :temper-tantrum: and the chances are good that you'll feel much better after that is all said and done ;) Hoping things turn around for you soon :)
Sending good wishes your way!

#8 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 05 December 2009 - 01:28 PM

Hi Gigi,

I agree with everyone else. I think we deal with plenty every day and sometimes it just takes that one more thing (like your back pain) that just puts us right over the edge. Venting does help. So does talking to a friend with a bizarre sense of humor (and a lot of understanding). If you can finish up a 'vent' with a good laugh, it's better than any amount of pills and platitudes.

I've got the sense of humor of a 10 year-old and this joke isn't exactly seasonal, but here goes:

Why didn't the skeleton go to the dance? No body to dance with.

Did it help? Please say you laughed - it was the only one I could remember the punch line for!

Warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#9 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 05 December 2009 - 04:23 PM

Well, I can say that I certainly laughed!
Sending good wishes your way!

#10 Joelf

Joelf

    Star Ruby Member

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

Posted 06 December 2009 - 02:09 AM

Me too!!! :lol: :lol:

Hi Gigi

I can empathise with you; I am also naturally an active person but sometimes it's almost too much effort to do things. I long to wake up and feel 100% healthy again!! :(

I do hope you'll soon feel a little better; at least you can vent on here to people who will understand!! ;)

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)


#11 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 06 December 2009 - 07:53 AM

Don't ever apologize for venting. That's what these boards are for. They are here for people who can truly understand what you are going through.

You and I are so much alike. Our lives have been turned upside down by this disease. I was the energizer bunny and now I'm always so tired. My mornings are good but when the clock strikes Noon it's like my body say's "that's it" and I'm done for. I have to take a nap and my productivity is in the toilet.

I have terrible leg and arm pain that my doctor has tried everything for. I in fact plan on calling him tomorrow as it has intensified so much and I just feel he should know about it rather than waiting until I see him in January. I know there's nothing that he can do for it but just in case there is.

Venting is good. Coming here to share so other people can be there for you is what it's all about. We all have our days and I don't think anyone but people who have this disease can truly understand just what we go through. I hear all the time "you look so good". I am so sick of hearing that I could scream. I feel horrible and my body fights me at every turn but I guess I look good.

I so hope today, tomorrow, and the next day are better days for you. If not, then come back here and vent some more. We all understand.

I too send you a huge, huge warm hug,

Peggy

#12 gigi08

gigi08

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 67 posts
  • Location:Pennsylvania

Posted 06 December 2009 - 03:43 PM

Okay - I laughed. Laughing is good for you and lately I haven't been doing enough of it. :emoticons-yes:
Gigi08

#13 gigi08

gigi08

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 67 posts
  • Location:Pennsylvania

Posted 06 December 2009 - 03:46 PM

Thanks everyone for writing. It helps to read that I'm not the only one. Peggy, I'm thinking about calling my doctor tomorrow to let her know what I'm experiencing. She put me on a medication the last time for the tingling, etc. that I've been having in my legs and feet and it's not helping and now I have this pain.
Gigi08

#14 enjoytheride

enjoytheride

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 06 December 2009 - 04:56 PM

Wearing on the nerves, isn't it? So if a little sympathy from the group can help, good for you for posting. (((hugs))) (can't use emoticons right now.)

#15 waterview05

waterview05

    Newbie

  • Members
  • Pip
  • 8 posts
  • Location:St Louis, MO

Posted 06 December 2009 - 06:24 PM

Hi Gigi,

I sure hope you laughed at the skeleton joke, because I did. Thanks Jeannie.

I am new to the forum and was diagnosed in late 2007. It's been a long road, but I'm still on my journey to healing. I too, like you was feeling like venting today because this entire week has been horrible. I've been experiencing nerve pain in my wrists and forearms to the point where it drove me to the ER. I just couldn't take it anymore. I started a new medication, Methotrexate, and I am hoping that it works.

I understand exactly what you mean about not being able to be active and to do the things that you love and enjoy. I will be 39 in January and my life has changed significantly in just this year alone.

Be encouraged and know that you can always vent and there are many of us wanting and needing to do the same.

Lots of hugs and hope you're feeling better soon, both mentally and physically.

Kelly
:emoticon-hug:

#16 susieq40

susieq40

    Silver Member

  • Members
  • PipPipPipPip
  • 129 posts
  • Location:Montana, USA

Posted 07 December 2009 - 07:47 AM

Hey Gigi,

I hope things are going better today. It's hard for us with this disease almost everyday! Especially in the beginning, since I'm in the beginning of being diagnosed, I think I've actually had this disease for years and years. But I'm glad I didn't know I had the disease, cause I thought I was okay, til I wasn't. At any rate, there are days I wish I didn't have to get out of bed, But because of my boys I have to, and I'm thankful for that actually. In the beginning if I wouldn't have had to get up I'd of probably just stayed in bed.

I'm so thankful for everyone on this site, cause we can all relate to what each other is going through. Everyone is such a great support. Thanks so much! And Warm HUGS to everyone! I try to remember everyday, that tomorrow I might feel better than today, and no matter what, try to find at least one positive thing to comment on every day. It's hard some days...but worth it.

Susieq40

#17 Vanessa

Vanessa

    Senior Bronze Member

  • Members
  • PipPipPip
  • 94 posts
  • Location:Teddington Middx UK

Posted 08 December 2009 - 06:20 AM

Hi Gigi

Just wanted to say I really understand how you feel.

I have only been diagnosed a few weeks and sometimes still forget when making plans that certain things are just NOT gonna happen.

It takes a bit of coming to terms with the fact that my energy levels are shot to pieces.

Also I finished a relationship with someone who was quite abusive almost 2 years ago and was really starting to have fun and enjoy my freedom with both my kids at uni. Seems like after years of looking after everybody else I am now learning to take care of me.

On the upside I have treated myself to a giant flatscreen television and am thoroughly enjoying my evenings wrapped in my furry blanket curled up on the sofa just vegging out.

And importantly I am blessed with some WONDERFUL girlfriends and one or two nice male friends too who are only too happy to join me.

Things could definitely be worse.

Keep your chin up and remember we are all here for you.
:flowers: