Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

anyone else experiencing this?


  • Please log in to reply
13 replies to this topic

#1 gigi08

gigi08

    Senior Bronze Member

  • Members
  • PipPipPip
  • 67 posts
  • Location:Pennsylvania

Posted 09 October 2009 - 02:41 AM

I've hesitated on writing because I keep thinking I'll get over it, but for some reason I don't get over it. I was diagnosed with sclero in May of 08. Limited (crest). Finally found a medication that helped the wrist/hand pain and most of the swelling. For about 4-5 months the knees have been getting worse and the achiness goes down my leg into my feet. I am mentally dead by the end of some days. I looked up the word brain fog and I don't think that's me. I think in my mind that I want to do something (example: scrapbooking) but to make myself get up and do it is a different story. I'd rather just sit in my chair and rest. I am a pretty active person and I do try to get my exercise in, but then my legs usually hurt more. My knees, legs, hands and wrist are swollen. I'm okay coming down steps, but sometimes trying to go up them really hurts the legs. I've told my doctor in the past 2 trips about the knees and she doesn't seem too concerned. Right now as I type this, I know I need to get my day started, but I feel wiped out, mentally and physically. I have hypothyroidism and am on medication for that and have been tested and it's fine. The reason I decided to write is just to see if anyone else experiences this feeling of wanting to do something - but just can't get motivated to do it and do you experience the knee achiness which goes down the leg.
Gigi08

#2 sandra

sandra

    Senior Bronze Member

  • Members
  • PipPipPip
  • 83 posts

Posted 09 October 2009 - 03:28 AM

Hi Gigi

this is a fairly new symptom with me , for the last 2 months my ankles go though days where the joints hurt when I put my weight on them and a constant tolerable ache mostly right knee , even laying in bed, and my wrists ache when I move them! I just hope these things don't progress further, Cause I can't imagine its process and don't want to go there! I am a little scared...
Lets see what other say, we can read the responses together.
Achey Pal, Sandra

#3 epasen

epasen

    Silver Member

  • Members
  • PipPipPipPip
  • 233 posts
  • Location:Lohja, Finland

Posted 09 October 2009 - 03:59 AM

Hi dear,

It is very depressing being 19 and sometimes feeling like you want to do something, but you just can't.. You don't have the energy, you're too much in pain or some symptom like this is on the way. The hardest part is probably the fact that I look very healthy, so it's kind of hard to explain to your friends why I don't do things like them, or why I don't do some things some days at all.

This can happen on mornings, afternoons, evenings.. Especially in the evenings. Right now it's almost 6 pm here, and after a working day I feel like going out to jog or walk around, but I don't know if my ankles and knees will like that. If I could just get myself motivated enough to do that, I know I'd feel mentally much better though.

So yeah, this feeling is very familiar.

Take care,
Emmi

#4 ladyhawke

ladyhawke

    Silver Member

  • Members
  • PipPipPipPip
  • 120 posts

Posted 09 October 2009 - 04:27 AM

Sounds to me like you both need some serious bloodwork done. I find that when I'm on the prednisone, even a low dose will help with the stamina as well as the achiness. I'm not exactly sure of the bloodwork that you need, but I'm sure others here can help you with that. - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#5 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 09 October 2009 - 04:44 AM

Hi Gigi,

The want-to-do-something-but-can't feeling is called fatigue.

The way you can tell fatigue apart from depression, is that with depression we just don't want to do anything at all. But with fatigue, there can be something we really really want to do but just can't get going enough to do it. Or if we do manage to do it, it is like pushing a freight train in front of us to get it done -- like a huge awareness of the exertion involved. No, rather like the exertion required is entirely out of proportion to the task.

Such as, with depression we wouldn't want to take a walk. Nope, rather just sit here and feel bad. With fatigue, we might really want to take a walk. We might sit there and dreambuild on the steps involved but they might seem overwhelming. Such as, I need to take a shower. Get dressed. Do hair. Rest. Get dressed. Put on socks. Put on shoes. Walk across room. Open door. Just thinking it through can be exhausting. Then let's say we eventually achieve the nice walk outside and we sure enjoy it, even despite some aches and pains, but a short walk feels as though we've run a marathon. That is fatigue.

Brain fog is when you're out for a walk, can't remember where you're going, discover you forgot your keys again, realize a good ways into it that you forgot to tie your shoes or have to think twice to figure out how to tie them, and then after you've smiled at 20 people passing you by, suddenly wondering if you remembered to put your false teeth in, which you hadn't, of course. But if you still feel good about this whole adventure, it means you're probably not depressed. And if you don't feel as though you're moving heaven and earth to take the walk, you're also not fatigued at the moment.

When brain fog, fatigue and depression intertwine, well then, all the bets are off.

See Scleroderma Fatigue for more information. The section covers the topic of fatigue and all.
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 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 09 October 2009 - 07:16 AM

Hello Gigi

Shelley has very well summed up fatigue and it is part and parcel of scleroderma. I no longer remember what it was like to think about doing something and just getting up to do it! This week I had hoped to do so light housework but have not been able to because the fatigue is worse, for some reason unknown to myself, than it was last week. That's life with sclero I guess.

As for the pain I had constant pain in my feet, calves and knees (when bending) for the first year and a half. I am pleased to say the pain is much better now although I still find going down the stairs more difficult than up.

I think that sometimes doctors initially home in on the really important stuff when we see them, as they should, which means that sometimes other issues like pain get overlooked during the usually brief consultations. I've no doubt most doctors would love to be able to focus on everything but modern medicine being what it is there just isn't enough hours in the day for them to do that. Perhaps try asking a direct questions about the pain rather than just mentioning it as part of a long list of symptoms so it doesn't get overlooked in favour of a more "serious" symptom. I write my questions down to make sure I get them answered.

I hope you get some relief soon 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)

#7 debonair susie

debonair susie

    Platinum Member

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

Posted 09 October 2009 - 07:36 AM

Dear gigi,

It is so good to see you posting, but I feel bad that you are so fatigued.

The ladies before me spoke to your symptoms very well.
It really is exasperating to feel that way...that's for sure :(
I can relate to what you posted. Maybe if we join forces...we can get some things done that we need/like to do...shall we give it a try?!

It seems, whether I've got alot or a little to do, no matter what...I get so worn out, that the next 2-3 days, I'm "recouperating". That's just how it is, for me, anyway.
Also, it seems I must psyche myself, in order to do most things, too. At least, when I lay out different things I want to accomplish...in my head, then I do what I am able. I just don't "allow" myself to get uptight if I'm not physically able to do all of what I had hoped to get done.

I'm sending good thoughts your way, as well as {{{Soft Hugs}}}, Sweetie :bye:
Special Hugs,

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

#8 gigi08

gigi08

    Senior Bronze Member

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

Posted 09 October 2009 - 10:45 AM

I have been on medrol and when I first went on it I did feel fairly good and swelling went down. Usually when I go on a high dose and then work my way down I feel really good. About 3 weeks ago the family Dr. put me on starting at 8 a day and it did nothing for me. I am no longer taking it because the rheumatologist thought the Arava was doing the job and that I wouldn't need the medrol any more. My problems did start long before being taken off the medrol. I didn't mention that I get a feeling in my knees and down my legs that feels like something beating (like a heart beat) in there. It's a weird feeling.
Gigi08

#9 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 09 October 2009 - 02:43 PM

Yes, yes and yes....

I think it goes with the territory. It does come and go with me however. I'm having problems with it right now. 2 weeks ago I felt great, well as great as you can when you have sclero. One day I wake up and I'm dizzy, foggy, don't feel like doing anything and I'm still in that funk. It's discouraging. I have found though that if I can be patient it will get better and I'll have a few good days to come...somtime. I hope it passes for you soon.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 northendpoet

northendpoet

    Bronze Member

  • Members
  • PipPip
  • 22 posts
  • Location:Washington

Posted 09 October 2009 - 05:47 PM

I go to my primary care physician this Monday to get a referral to a scleroderma specialist in Seattle. Dr. Jeffrey Carlin. Hope he's good and patient and a listener. So, I don't have a diagnosis of scleroderma (yet) but I do believe that the right doctor can diagnose me and get me going in a more positive direction. Seems like symptoms are mounting quickly. Now too often I feel like something is caught in my throat.

What you said about your legs really hits home for me. It feels like my muscles hurt. I threw away two pair of knee socks last week thinking they were too tight around my calves. Then as I was ready to throw away the third pair it occurred to me that "it's not the socks. It's my legs. The muscles hurt in a weird way." And my knee really bothers me (only the left knee). Quite frequently it impairs my ability to go up my stairs, never down them. And knee pain, which feels like it's in the front center, and behind my knee. And one day last week my legs 'hurt' so bad I had to take my pants off and just lay in a soft blanket. WHAT"S THAT ALL ABOUT?!?!?

Fatigue. Yes. Desire to do something, have fun. Just not the energy. And sleep doesn't restore me.

All that being said - I had a GREAT day today. Best I've felt in quite a while. Out in the sun eating crab, playing with the dogs, even did some cooking and cleaning and I'm not wiped out :emoticons-yes:

Blessings and good days to us all!

Northend Poet
Northend Poet

#11 enjoytheride

enjoytheride

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 10 October 2009 - 04:03 PM

Hi Gigi- It is a very hard thing to give up what I thought I should do and start listening to my body tell me what I can do. At first I would call myself lazy or whiney or, worse yet, depressed. Then I figured that what I felt was what I felt. To day for example, I was in the middle of shifting firewood when I said, I just can't do this RIGHT NOW. The wood is sitting in the cart in the middle of the drive and will be happily waiting for me in the morning.
Actually I have sort of come to look forward to these moments when I give myself permission to dodge work and just sit with a book and doze if I feel like it. It's a good feeling to be OK with this. Actually I sort of feel smug in fact- I get to sit around and indulge myself in what ever easy activity (or do nothing ) I want and still think I'm doing the best thing. It's a reward for having successfully taken care of myself.
I do hope that you are soon able to find what works best for you.

#12 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 10 October 2009 - 04:06 PM

Enjoytheride,

I like your attitude!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#13 debonair susie

debonair susie

    Platinum Member

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

Posted 11 October 2009 - 10:47 AM

Enjoytheride, I like the way you think too! :emoticons-yes:
Special Hugs,

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

#14 gigi08

gigi08

    Senior Bronze Member

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

Posted 13 October 2009 - 08:46 AM

Called my Dr. today to see if I could get in a few weeks early since my knees and legs are giving me so much trouble. I just wanted to see if she could tell me if this is related to scleroderma or if I should be seeing another Dr.. She is out of the office today but they took my message and did call me back and she is putting me back on the steroids until I go back to the office on November 6th.
Gigi08