Having pretty bad foot/toe and hand pain.

[carrie235]

Hi Everyone:

I haven't been on the forum in a while because of the holiday and on sort of vacation.  Anyhow, during my lyme journey since symptoms started in March of 2010,  I really haven't had much pain to speak of.  Except for pain in my toes was one of the first things I had, but quickly went away to be followed by facial numbness, tingling/vibrating, on and on.

Now almost five months into treatment, for the last week, I've been having terrible pain in my toe joints and in my hands.  I was tested for Rhuematoid Arthritis (sp?) when I was first seen at UCSF MS center and the test was negative.  My question is, does anyone think that it's a possibility that I have developed RA now because of the lyme or is my joint pain simply a herx type reaction?  I'm scared now.  Believe it or not, now that RA guy has kicked the MS guy off my shoulder and RA is a concern!  Ugh   Does it ever end.

My left big toe hurts so bad that I am basically having to lift it off the ground while walking and the pain doesn't come and go...it seems to be with me 24/7 now whereas before, in the last few months I would experience some toe pain but only briefly.

Anyone else suffer from this pain and if so, does it go away?

Other than the pain, I'm doing pretty good with my symptoms except for now I seem to be getting a knocking or tapping feeling near my right knee at night when I'm watching tv.  Not painful, just there and that is a new symptom for me and it's on the right side where most of my symptoms have always been on the left.  The pain in my joints though...that's on both sides of my body.

By the way, I have not done my rife machine since I think 6/25 so I don't think this pain is because of that.

Thanks for your help and if anyone can share their thoughts with me, I would appreciate it.

Carrie

[wonko]

Joint pain is a common symptom of Lyme and co-infections but Lyme arthritis rarely causes the type of joint destruction characteristic of RA.  Are your joints red in appearance and hot to the touch?  To my understanding RA also causes those symptoms, while Lyme arthritis typically does not.  (Hedging myself with the word "typically" since I'm not a medical expert and their are always exceptions to rules.)

I did experience some joint damage due to my illness, noted by a rheumatologist during a physical exam.  She noted my knuckles were "filling in" somewhat and also some hard nodules on my hands and feet that developed.  She was concerned about lupus and RA, but my tests were negative on separate blood draws.

My joint pain has diminished with antibiotic treatment, but was always worst in my hands and feet.  I do still experience morning stiffness, a symptom that can span RA and Lyme, but it is less severe than it was.  My inflammation markers (SED rate, c-reactive protein) are consistently high on blood draws, consistent with these lingering issues.

It is definitely a good idea to keep an eye on your Vit. D levels.  I know there are some conflicting theories out there on whether or not, or to what extent, Vit. D should be supplemented, so I'd discuss it with your doctor.  Some diseases, including Lyme, are theorized to deplete Vit. D levels, and there are also links between Vit. D. And autoimmunity.  I'm not an expert in any of these theories, I just know they are out there and am mentioning them in case anyone wants to look into them further.

My Vit D levels at times were extremely low, and supplementing did help me feel better.  (Not with joint pain specifically, but with other weird issues like my legs feeling unnaturally heavy.)

There are a million causes for foot pain.  It's possible that if you have any pre-existing foot problems, the inflammation from the Lyme could be aggravating it.  For example, before I got very sick I developed a bunion.  It would hurt from time to time, but after my Lyme got bad the pain from my bunion became much more severe.  

Hope you feel better soon and that the RA tests are negative.

[navyguitar]

Have the both of you had your vitamin D levels checked?

[ree427]

I have pain in all my joints and one time had a pain in my one toe which made it feel like it was broken.I could barely walk.  Now my joints just ache and throb and this has remained fairly consistent. I am not sure about the connection between lyme and RA. I know RA causes joint destruction. It's possible it's just lyme arthritis.