[debatat]

Hi all

Haven't been posting as much as usual due to my hands being so painful and becoming extremely deformed. Typing and using the mouse was really aggravating them so I decided to give it a rest for a while.

I had my local rheumy appt on Wed and I saw a different consultant to usual. He was really nice, told me to put down my list!!!! and tell him what the problem was. I explained about my hands and showed him photos of how bad they can get. He then examined my other joints and was able to see my limited movement with them. I told him how difficult certain activities were.

So he decided hands are RA and has put me back onto steroids for 6months after which I will be looking at something stronger, and he is going to refer me to a pain clinic. Apparently I also have a contracture and soft tissue swelling which is common in RA.

My london bridge doctor did say he thought that this was likely, and I was okay after the appt as I thought at least I am being treated. Now though I find myself very emotional and am finding it hard to come to terms with. I cant believe how quickly my hands have become deformed and lost even more use in them. I know that others are worse off than me, but I am struggling at the moment....... really struggling. :sad: I wont bore you all with this, but I wanted to let everyone know why I am not here as often as I have been.

I hope everyone is well.

Deb

 

[Maia]

Limb deformities also appear in lupus... especially curved fingers. I'm so sorry to hear that this problem is worsening and causing you so much pain. You have every right to feel the way you are right now. I am hoping for you that the prednisone will improve things greatly for you in the near future.

Did they take x-rays of your hands at all to verify that there is joint damage that is consistent with RA? I would recommend that be done as the medications to treat RA are sometimes at arms with those to treat lupus.

Best wishes, many (((hugs))) and thanks for the update. Take care!

 

[greenhaggis]

Debbie,

I hope the steroids kick in quick, no fun being without the use of your hands!

Lets hope the Pain Clinic Appt is not far off! Word of warning, they dont usually diagnose anything just treat the pain and perhaps send you off to their physiotherapists! Perhaps at this stage you need a referral to an Orthapeadic Specialist too (they will run the tests required to diagnose properly).

Take care and hope to chat soon!

 

[onetay]

deb,
I am so sorry that now you have ra. I have that added to my list also. I have been luck and my hands are still good, it is the rest of my body lol. I am so sorry that you are in pain but I do understand what you are going through. I hope you feel better soon.

 

[keebler]

Hi Deb,
I am sending you some big, soft gentle hugs.:hug::hug:

We all have lupus, have the pain and emotional roller coaster ride of emotions. Hearing another label that we have is hard to hear. :hug:

I do agree with the others and hope you get the x-rays etc to confirm that diagnoses of RA.

Let us know how you are doing.
Love,
Lyn

 

[debatat]

Thank you all for your kind words, I have missed the site and being in chat!!!

I believe that the diagnosis is being made on the basis that I have chronic synovitis in my hand joints mainly although it is now spreading especially to my knees and wrists. I am bit frustated actually as I have had a diagnosis of inflammatory arthritis for some time and I was always told my symptoms were all caused by one disease even the speech loss and myoclonic jerks. Now they have decided to call my hands RA and I don't understand. When I was at London bridge my hands were ok for the only couple of days since September, so when the doc said he thought my hands were RA, I can only assume he said this because of letters documenting synovitis in my hands?

I havent had x-rays for 2 years. I am still trying to research this and cant seem to find any info, will keep trying though. My lupus is flaring as well as hands and I can't see how it can be different, unless inflammation from one sets the other off? I am really trying to keep positive, but am finding things abit much at moment and the pain is relentless. Will try and join you in chat soon.

Thank you again for your replies, it helps to know I am not alone with this struggle.

Hugs

Deb