Home Forums General Discussion More questions about joint damage

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  • #300874
    Tiff
    Participant

    Hey all,

    We've talked about joint damage a lot on this board, and it seems a mystery to me still.  One thing I have not heard discussed much is how using the joint influences the damage.

    Since my spectrum of symptoms has been palindromic I have been able to observe a single joint go through a short, intense span of flare.  After this process systematically went through every joint in my body (except my toes), I have observed a cycle.  It would start very mild, and if I was able to stop using the joint immediately it tended to go through the rest of the process with a wee-bit less pain and quicker.  If I continued to use the joint it made it all worse.  Nevertheless, the process had to play itself out much as an acne lesion will do or a cold or flu will do regardless of how you try to “fix it quicker.”  With these palindromic pains I would completely lose the use of that joint.  In fact, at times it was so excruciatingly painful I could not even touch or move the joint without wanting to scream.  Using it was not an option.  Then, as it ebbed, I would become very aware that using it again was not only safe to do, but would even help return the joint to normal.  It was obvious to me, and I have thought it might be a factor as to why people with PR do not sustain permanent damage – they simply can't use that joint while it is inflammed.

    Now that the pains are much lower level and coming and going in many places it is all unclear.  This more typical RA pain (I think) makes it impossible to say if I should or should not use the joint (is it coming or going in that place?).  I really feel like using the joint at the wrong time during this process will greatly increase the likelihood of joint destruction, and refraining from use would likewise keep it from occuring as much.  But this becomes impossible when it is so widespread and migrating so quickly.

    Getting to my question (sorry I'm so long-winded), does anyone think that one of the reasons that there is so much variation in damage is that some people are refraining from working the inflammed joints while others power through the pain and use it anyway causing more damage?

    With the PR pain I had no choice, but now I am trying to refrain when I can, but at some point I will have to give up on that and use the darn joints anyway.  You can't just stop living after all.   It isn't like it is the person's fault or we are causing the damage, but I was just wondering about this as a possible variable to joint destruction.  Any thoughts?

    #317206
    Maz
    Keymaster

    Hi Tiff,

    Good question and wish I had the answer! Seems that joint destruction is very unique to the individual, some people with mild disease getting it when those who are worse off seem to avert it for longer.

    I can only relate my experience, because I had PRA in the beginning of my disease….these migrating joint/muscle pains very typical of late stage Lyme. like you, the pain would erupt in one joint, like the shoulder and bicep within a very short span of time…escalating within hours to the point where I could not life my arm at all and would have to hold it in a sling position. This would disappear and appear just as mysteriously in another joint in the day following…finger, wrist, knee, foot, jaw, etc. Even if I tried to use the joint, it would have been impossible…the joint was just frozen in intense, unrelenting pain. When it disappeared in the affected joint, however, I was able to use it normally, as usual.

    However, when the migrating PRA-like pain became fixed in all my joints, within about 6 weeks, the pain was just as bad, but I couldn't move anything and I didn't have the hope that it would be gone within a day or two. What this led to within a further month or so was completely frozen joints. I still had too much inflammation to be able to move them, so I had to wait till I was past the initial 3 month herxing period and inflammation started to come down before I could get some physicial therapy help.

    What is clear is that being unable to use the joint for long perods leads to muscle and tendon atrophy. This in turn led to swivelling joints, so this would definitely lead to more joint destruction without the supporting tissues to keep the joint in alignment. Trying to force this PT process probably would have led to more potential for damage…so it was a very slow, gentle return to range of motion….keeping everything moving, but in very slow increments of stretching the muscles and tendons, just as far as they would go and then later focusing on increasing muscle stength again.

    An example was when I started PT for my knees last Feb for 3 months. I couldn't have done any PT before that…pain just too bad, but as inflammation came down, the timing seemed right to get some ROM back. The PT started with gentle table exercises, as he said my petulla was out of alignment. I had to get that back in its proper position before I could start working on the surrounding muscles and tendons with more intensive exercise…starting slow on a recumbant bike and working up to steps, etc.

    I don't know if this is relevant at all to your question, but I think short term pain tends not to do as much damage to the joint than longterm, chronic pain and inflammation in the same joint….simply because of the atrophy that occurs and the constant bombardment of inflammation in one area.

    Sorry to waffle on…;)

    Peace, Maz 

    #317207
    Tiff
    Participant

    As usual, Maz, your post is very helpful.  I agree with all of your observations.  If the inflammation remains, damage is vastly more likely.  I still can't believe how your description of Lyme fits perfectly with PR symptoms.  Completely contrary to my first rhuemy's comments about how Lyme isn't like PR!  I can't believe you endured that PRA pain all over!  My worst fear!  Thank goodness you moved past that!

    #317208
    Maz
    Keymaster

    Yea…it was not pleasant and I empathise in a very big way! :sick: Tiff, did I ever send you the link to the talk by Dr H, a well-known Lyme Literate physician, who spoke at a conference a few years ago and mentioned that Bb was “the only diagnosis where migrating arthritis occurs?” I don't know how true that is, but it certainly piqued my attention….especially if PRA patients may suspect borreliosis and friends.

    Dr H is second from the bottom of these video clips…my doc, Dr P, is just above him. Also some good clips of some other very well known speakers.

    http://www.ctlymedisease.org/videoclips.htm

    Peace, Maz

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