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      Upgraded Sclero Forums!   05/18/2017

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Lyn

Hello again

13 posts in this topic

I am not sure about font and size, but I guess I will find out! Hi, it has been quite sometime since I have been here, I had joined when I found you at MSN and when things changed I felt lost... I could not figure this out! My mind was fuzzy. Anyway, I would like to start coming back to see if support like this will help me. I do feel alone in this. I was diagnosed with sclreoderma in 2001 when a barium swallow discovered the cause of my heartburn and swallowing trouble. I have raynaud's and a lot of bad tendon pain in hands/wrists/feet/ankles. A physical therapist said he can feel the calcification in these tendons. I was told the hand pain is from the tendons by a hand specialist. I have NO skin changes, and no organ damage. All my blood work points to sclero, but neg scl-70..if I remember the test correctly... This hand pain is awful, and they hurt most with the raynaud's, but I only turn a dusky purply pink, nothing turns white. Even when warm though this pain can be crippling. No joint damage at all! I get very discouraged. I hope a visit here can make me know I am not alone in this. Other people have this disease. I am a quilter, and I need my hands! I do this anyway, so many of my quilts are made with tears. Lyn ...with only one 'n'

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Hi, Lyn. I am sorry to hear you are suffering with your hands. It can be very painful for many, especially if you work with them. I am glad you decided to come back and give the new site a try again after all this time. The color changes in Raynaud's very from person to person. Here is our page on Raynaud's for more information. I have had quite a bit of hand pain from inflammation of the joints as well as tendons, though no calcification. I have found some relief from anti-inflammatory medication. You may want to ask your doctor about that and about something to control the Raynaud's.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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I would love to get relief with advil or such, but I am allergic to aspirin, ibuprofin and naprosyn. I cannot even take the prescription types of anti-inflammatories. I miss the pain relief I used to get from them, but my body turned against them all. I get hives and my kidneys stop working when I take them, and the doctor doesn't want to trigger a kidney crisis. Some days I can live with it, but others I just want to sit and cry with the pain. I don't stop using them though. I am afraid to!

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Lyn, you said you were a quilter. I also am a quilter. Do you have a pair of the fingerless stretchy gloves that are sold at most fabric stores or quilting shops? Mine are called stress relief gloves, and they run just under $15.00. I can quilt or knit a bit longer when I am wearing the gloves. They help give relief and also keep your hands warm, and that helps with the raynauds. There are medicines that can help with raynauds. Some of the joint and muscle meds may work for you if you can't take anti - inflammatories. I always take pain relievers before starting out in the morning, to help my fingers and hands function properly. I can't and I don't quilt for hours at a time now. I usually do one to two hour intervals and sometimes every other day, so that I can give my hands a rest and a change. I had carpal tunnel surgery already so I don't spend great amounts of time doing the same repetitive things over and over.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hello Lyn

 

Glad you have come back and I am sure you will find support and helpful advice here. Be assured that you are not on your own in this, I know you alone feel your pain but there are lots of us here who live with pain and as such we can support each other. I now consider pain part or my everyday existence and no doubt will do for a long time to come.

 

I get hand pain because I have tight restrticted skin and contractures which means every finger is bent over at the middle knuckle. This morning I did not want to move my hands as the skin was sooo sore and they ache the more I use them and often cramp.

 

This is a difficult multi faceted disease that takes us on a journey we weren't planning on taking nevertheless we do adapt, do cope and do continue living...it's life Jim just not as we know it.

 

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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I do have those gloves, just haven't thought of them. Good idea. I do take tylenol for the pain, but you are right, taking it before the work could really help! I also have had bilateral tunnel releases done, and the symptoms improved for a bit, but now it is back, though nowhere near what I had before the surgeries.. yikes! 17years ago for the right, 8 years ago for the left!? I guess the surgeries helped quilte awaile, time has slipped by me! Thanks for the ideas. As far as meds go, my doctor says since it isn't a frequent or severe problem, she would rather avoid it. I am on many different meds for a different problem, and squeezing in a new one is just hard. They do not go white, and the symptoms go away with other treatment... hot wax, heat wraps... you know the ones. I have tried the thermacare hand ones, wow how good do those feel!?! Can't do a lot with those things on, but sitting and stitching can be! I will talk to her next time I see her about the benefit of taking meds for the Raynaud's, for the pain if for nothing else.

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I just wanted to send a warm welcome. I too have Raynauds but don't have the pain like you do. I have terrible muscle pain in my legs and arms that is horrific. I wear a prescription pain patch. I can change it to higher if I need. Maybe this is something that would help you. You change it every 3 days and it administers pain relief 24/7. My pain is so bad that I also have to take a stronger pain pill in addition but I don't know what I'd do without the pain patch.

 

Warm hugs,

 

Peggy

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WOW! I had no idea such a thing existed! I will mention that too, it could help me walk more, I have terrible hip and ankle pains that slow me down from that activity that the doctor really wants me to do. I have a compressed nerve in my hip, sort of like carple tunnel syndrome in the hip, it runs in front of the groin and effects my thigh. It is a show stopper. The burning and throbbing pain is just awful, and when it hurts like that I need a stronger pain medication that puts me off my feet. I am getting such helpful advise here, thanks you.

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Hi Lyn,

 

I'm really glad you are back! I see that you've gotten some feedback and I hope you will stay with us, now!

 

I hear you, about the change-over...alot of folks had the trouble you spoke of...I have had months where I either had computer trouble, or couldn't get back in. I'm so happy you are here now.

 

You are a very talented lady, along with Sheryl and others who quilt. When I was younger, having kids and such I was in on a few quilts. I sit in envy of all of you who do it...what a creative and beautiful art.

I did make a quilt and matching pillow sham for my older grandson.

However, since that time, I've a great deal of bone reabsorption...is that the right word?..., which has limited the finer works that require fingertip exactness...sewing, quilting and the like.

 

I will keep good thoughts for you, in the hopes that you can find a way to break through the pain in your hips and ankles.

 

Hugs,

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Lyn,.................the pain patch comes in different doses. I started out at 50mg and I am up to 75mg now. I have on occasion taken the 100mg but I try not to as I'm afraid once I get up there then what............then I'll have to put the 100mg and the 50 on too. Like I said though without it I don't know what I'd do. Talk to your doctors about giving it a try as it sure has helped my pain management big time! Good luck to you and let me know how you do.

 

Warm hugs,

 

Peggy

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Dear Lyn,

 

So sorry you are having pain and other problems. I can't sew or quilt but love quilts. Never could develop the coordination for that skill. Just wanted you to know you are not alone and feel very deeply for the problems you have and the problems everyone here has. It would be so nice to wake up some morning and it all to be gone or at least a cure to prevent others from going through any of these diseases. We can hope.

 

I can not take many of the standard meds for pain either and am on plaquenil and methotrexate injections and plenty of reflux medicine. Raynauds and scleroderma threaten my work also and would not be able to do what I do for a living either and hope so hard my hands won't get to that point. Already have had to adapt to not lose my skill. My skill has also added to some of my problems but I love my job. You have touched my heart.

 

With gentle thoughts,

 

Judy


A happy heart is good medicine.

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Lynn I get a lot of hand pain mainly through bad Raynaud's & have had a lot of nerve pain due to carpal tunnel issues. I have had both hands done in the last few months & they do feel somewhat easier but the pain has not gone completely. So like Sheryl I take painkillers in the morning so that I get my hands going. I also do embroidery (mainly machine now) and knit but find with knitting I can only do a few rows before my hands begin to cramp & cause pain so don't do an awful lot anymore. My hands also swell which makes them feel very tight which can make me somewhat clumsy at times.

I hope you can find some sort of pain relief which works for you so that can do what you enjoy.

 

Take Care

 

Jensue

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Welcome back Lyn ~ I just know you will find the support here that you need. Everyone here is so warm and helpful, check in once a day and you will find so many things going on, it almost makes you forget your pain for a time.

I too have Raynauds and I have also had surgery for Carpal Tunnel, but found it did not really help.

Although we may not have the same problems, we all understand just the same.

Please stick around and comment, vent, laugh, cry ~ it's all good!

Much love,

Nina (DE)

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