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canon

Update on sclero progression

10 posts in this topic

Hello to all,

 

Have been taking care of my hands and have not been writing too much as of late. It is quite painful at times to write or type due to raynauds, calcific ulcers, tendonitis and an enormous amount of swelling in my hands. My feet are a mess too but thankfully I don't use them to type. I have been reading through though and keeping you all in my thoughts.

 

Saw the Rheumatologist today and she told me the systemic lupus diagnosis was a type-o and I do not have it. That is a relief. She also told me she is concerned about my hands and how swollen and thick they are. I can increase the methotrexate or try fish oil. I'll try the fish oil and see. It is very difficult to do the exercises too. My forearms and biceps are also getting involved. There is such deep pain at times in them that it makes me feel faint; luckily it passes quickly and stays away for awhile. I will have lab done in 4 weeks and see her again in 10 weeks but to call if things become more unmanageable. I'm not whining am I? Sometimes I feel that way, does any one else feel like that?

 

The rheumatologist is still calling it Limited with a but? The upper arms don't sound good and labs aren't helping with judgement. She said it sounds like muscle involvement and maybe another connective tissue disease or the limited is changing to a more involved form of scleroderma. I won't say the word if she doesn't.

 

Thanks for listening and thank you so much for your support. I just love you people. You really are a great group!

 

With gentle thoughts.

 

Judy


A happy heart is good medicine.

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Judy, sorry to hear that you have more things developing that is causing intense pain. Sometimes we need to work through the pain. It sounds like you need to disrespect the pain and do your best to use those arms and especially work on finger flexability. They could end up tightening but if things are progessing slowly maybe you can fight it and keep them working. Since you are in pain anyways, the soft stretching and limbering up of each finger and arm might help stop progression. I understand some of your pain. I am a lucky one I continued working through the pain and stiffness. Most days now I have a touch of arthritis type pain and that is about it. Keep typing, that is an excersize and keeps thoses fingers working. Do your soft stretches and use a parrafin wax machine to dip your hands in if possible. If you do that a couple times a week it might help. If nothing else it will keep you busy and your mind off your pain. I hope you find something to get relief. Just don't stop stretching and moving and keep your hands from resting in a fist shape for comfort, stretch them out flat, any time you see that they aren't flat, then flatten them. I sure hope you start getting some relief soon. I hope some of the hints that I do will help you, and have a good day.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Judy,

Sorry to hear you are having such pain. Glad you don't have Lupus after all.

No, you aren't whining, but feel free to if you want too. I hope the fish oil helps.

Cheryle

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Hi Judy

 

I am also sorry to hear you are having such a hard time with the pain and swelling. You definitely are not whining but know that we wouldn't mind a bit if you wanted to! I'm curious to know how much fish oil your rheumatologist recommended , if you don't mind me asking, and I also hope it works for you.


Sending good wishes your way!

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Hello Judy

 

Are you whining...no...have something to whine about...YES!!

 

Our hands and feet are basic to eveything we do so when we have issues with either or both the impact is really felt.

 

Keep exercising as any benefit is worth it in the long run, sometimes long term thinking is hard when the pain is immediate.

 

I hope things improve quickly for you and I agree this is a great group including you. :lol:

 

Take care

 

Amanda


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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Dear Judy:

 

I'm so sorry to hear about your pain. I can relate so very much as I suffer from intense muscle pain in my legs and arms. I am aided by a pain patch that I wear and change every 3rd day. It can be in different milligrams and presently I'm trying to get by with the 75mg. In between I take an oral pain medication and without those two I don't know what I'd do. Today for some reason the pain was so intense it brought me to tears. In May I did IVIG therapy for 3 months and finally the 4th month I finally noticed how much it had helped. I am now in November starting up with the IVIG again for a couple of months and hopefully this will bring some relief. Between the pain patch and the IVIG they both may be something you should look into to see if it would help. I hope you get some relief and I'll be sending you good thoughts.

 

Warm hugs,

 

Peggy

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Hi Judy ~

I too am so sorry to hear that you are having to deal with such pain. Life is just not fair at times...

I get such a heavy feeling when reading all the courageous and positive postings here on this forum, what a wonderful bunch of human beings.

I try to meditate every day to deal with my pain ~ I continue to work even though I feel like someone beat me up by 3 in the afternoon.

I will definitely keep you in my thoughts and please don't ever think of yourself as a whiner, nothing could be further from the truth.

You are a wonderful, caring, courageous person dealing with a very nasty disease.

Try to smile!

Much love,

Nina (DE)

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Thank you all so much for not hearing me whine.

 

Sheryle, I will keep exercising and using the parrifin hand baths. Maybe I will do the exercises after the bath and it won't hurt so much. Thanks for being there to help me pick up my spindly knees and keep on going.

 

Cheryle, Thanks so much for being there.

 

Snowbird, Thanks and the Rheumatologist suggested I take1000mg a day of fish oil.

 

Amanda, I will keep exercising because I know you and everyone else has to be doing them too. Many of us anyway.

 

Peggy you are so kind. I am so sorry you are having muscle pain too. The pain is so deep it is hard to describe. Mine is like a spasm of some sort. It starts inside and wells outward

toward my skin but not quite touching the outer skin. It does make you feel like you will drop from it. If it were to be present all the time with me I would ask for what you take for it because it is needed. Thanks for your courage and thoughfulness.

 

Nina, I too still hold a full time job but can rest when needed for a few minutes here and there. Trully I am amazed and encouraged always by everyones courage and thoughtfulness on this forum and know each one has different horrific symptoms to deal with from the past, present and possibly future. At least we know there are people that are looking for a cure or for a better treatment and we can hope for a better tomorrow. Nina you are a great person too.

 

You all have brought so much to the world and to help make it a better place to be. Thankful always.

 

With gentle thoughts.

 

Judy


A happy heart is good medicine.

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Hi Judy. I haven't been online in a while so I'm just reading your update. I'm so glad to hear you don't have lupus and am sorry to hear you are in such pain. The muscle pain is new to me so I don't have any remedies or suggestions to offer. I hope some of the suggestions given provide you some relieve to you and I am going to try some as well.

 

You are in my thoughts.


I may have Scleroderma, but Scleroderma doesn't have me!

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Hi Smac,

 

You are so kind. Hope you are doing ok and staying well. I think about everyone here so much and how brave everyone is. Though the disease has been around for such a long time, it continues to be quite devastating even in its mildest form I think. So, people here are always in my thoughts and I hope always for a cure and a preventative solution so the disease will cease to exist.

 

My hands are not as painful but continue to be swollen. I don't know what the muscle pain is from either. It is new for me. The rheumatologist is doing labs in a few weeks. They will be mostly for the anticardiolipin Ab.

 

With gentle thoughts.

 

Judy


A happy heart is good medicine.

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