Swollen hands

[Nielk]

Could it be a side effect of the drug they gave you to get off the klonopin?

I'm not sure about the swelling, but pain could certainly be related to the very low vitamin D level. Hope you find some answers soon...

Thanx Danny,

I went off that medicine (Trileptol) for 6 weeks to see if it makes a difference but, no change so I went back on it.
I'm not sure about Vitamin D because I have been low for the past few years.

 

[taniaaust1]

Thanks Tania. How long did yours last and were you able to attribute it to anything?

If Im remembering right .. i think it lasted 2 or 3 weeks.. and I had the issue then go but it then reoccurred again at a later date eg 6mths or so later with the same thing happening again (same hand, in my case it was just the one hand) this happened to me 2 or 3 times. At that point of time.. I hadnt been on any drugs or previously had them as my doctors didnt believe in treating CFS or any of the weird issues I had so it wasnt a drug response.

I know the swelling hand issue in my case must of been solely due to the ME and not any drugs or drug response due to me only being on basic things like vit C, Vit B complex which werent new for me at all).

I just looked up my (self written) medical notes and I had my hand swell back in 2006 (if that helps anyone find my actual full old post on my ME hand swelling issue).

In my medical notes.. I also have written that around that time I also had a lot of ongoing issues with hand weakness specific to that hand and also shaking in that hand due to it being so weak (I didnt have that issue in my hand which didnt end up swelling). That was going on for a couple of months before it swelled up.

My notes say I had trouble with things like dipping biscuits into a cup due to the hand weakness and couldnt hold my newborn niece for more then 5mins due to the issue that hand was having. The weakness hand issue for me was happening before the swelling incident but I thought I'd mention it as Im curious if your hands which have the swelling, if they are very weak too? So weak they can shake at times? I also had issues with that same hand like just giving way too (no idea if that all was related to the swelling or just separate symptoms I had with that hand at that time).

You may be the first Ive come across who have had similar hand issue as I had (it dont seem to be a common at all ME symptom).

edit.. It must of been at the not crazy forum I posted about my hand as I just found my introduction post here and it was in 2010 I came to PR (so the hand issue was before then). Anyway.. if you are interested in my symptoms to compare, they are listed in my post from back then http://forums.phoenixrising.me/index.php?entries/my-67-symptoms-of-cfs-me.368/ number 32 on my symptom list.

I really should update that list some time.. I recommend everyone to keep records of what symptoms you get and the years you get them to see if there is any patterns in the progression of this disease. One often forgets symptoms you got years back with the ME if you dont write them down.

 

[Nielk]

Thanks @tania for your detailed description.

Both of my hands are swollen although the left one more than the right. I don't have weakness (beyond my general weakened body for ME/CFS but I have pain. I can't form fists and have difficulty holding small items. I have not been able to do my art at all since I have so much pain in them and I can't hold a pencil or paintbrush with my hand.

I guess this will just remain a mystery and I will have to wait and hope that it will go away.

 

[dannybex]

Thanx Danny,

I went off that medicine (Trileptol) for 6 weeks to see if it makes a difference but, no change so I went back on it.
I'm not sure about Vitamin D because I have been low for the past few years.

I found out about a month ago that I'm very low in vitamin d, and then just in the last couple of days found a study that showed that men use 3,000-5,000iu's a day -- and they were healthy! So I'm getting a new brand -- one that I took years ago and forgot about -- and hope to start it over the weekend. If it's low, that would be one thing you can at least do something about...not sure if it would make a difference with the swelling, but probably with the pain, and your immune system. But of course I'm not a doctor...so might be something to run by your doc, and research online.

 

[Nielk]

Thanks @tania for your detailed description.

Both of my hands are swollen although the left one more than the right. I don't have weakness (beyond my general weakened body for ME/CFS but I have pain. I can't form fists and have difficulty holding small items. I have not been able to do my art at all since I have so much pain in them and I can't hold a pencil or paintbrush with my hand.

I guess this will just remain a mystery and I will have to wait and hope that it will go away.

I just wanted to fill fill you in on the mystery of my swollen hands - which have persisted and worsened since. I went to another Rheumatologist last month and he took more detailed blood work and an ultrasound of my hands. The results show that I have Rheumatoid arthritis. My RA factor showed negative (which it does for 4/4 of RA sufferers) but, there is a more specific new test, anti ccp which select RA with over 97% accuracy. My level was very high. In addition the ultrasound showed inflammation in three areas of each of my hands including two knuckles and my wrists. No wonder I have been in so much pain! The first doctor just took basic bloodwork and when negative dismissed me. (is it because I told him I have CFS?) This second doctor really listened to me and followed up.

I am lucky that they found it because early treatment for RA is so important to avoid permanent damage. I am now on a steroid and an immune suppressant. The doctor said it should take at least a month to start feeling any improvement

I am posting this here in case anyone else has similar issues. You should insist on them testing for this anti ccp.

 

[peggy-sue]

It must be an incredible relief to find out what the problem is.

I get swollen hands and fingers as an ME symptom. I have discussed this symptom on other ME forums, it IS quite common. It was generally referred to as "sausage fingers", (because they're about as useful as raw sausages).

I have also suddenly become allergic to things I wasn't allergic to the day before, coming up in hives all over.

But any sort of swelling that involves anything anywhere near your mouth is really, really scary and ought to be investigated properly and seen to immedidiately. rolleyes
There is always the very real worry your throat could swell and choke you.

 

[Nielk]

Are you taking steps to correct the first two, namely, Vit D and HbA1C?

Low values of CK could be associated with rheumatoid arthritis. Of course, rheumatoid arthritis is one manifestation of mast cell activation disorder. See this abstract, for example:

Mast cells in rheumatoid arthritis

Abstract

Rheumatoid arthritis (RA) is a chronic disease of joints that is characterized by inflammation, abnormal cellular and humoral immune responses, and synovial hyperplasia. Mast cells (MCs) are involved in several of these inflammatory and immune events. MC-derived mediators induce edema, destroy connective tissue, and are involved in lymphocyte chemotaxis and infiltration and in pathological fibrosis of RA joints. Moreover, MCs are involved in angiogenesis during RA, and their proteolytic activity results in cartilage destruction and bone remodeling. Lastly, MCs could be a target in the treatment of RA.

@nanonug - This is over a year later and I have been diagnosed with RA about six weeks ago. I just re-read this thread and see here that you had mentioned RA way back then! How is RA connected with mast cell activation?

 

[Hanna]

Thank you Gaby for the info. It is so important that a diagnostic of RA should be made in the early stage of the disease. Hope that you'll get now good treatment and you'll see relief. Though it is not fun to know there is clearly an auto-immune condition involved, at least you'll be able to get some medical help.