SurfMom Posted December 23, 2012 Report Share Posted December 23, 2012 In week five of the exacerbation that won't quit. One of the symptoms that won't let go is joint, particularly wrist and arm pain. Her grip is very weak. Anyone else experience these symptoms of have ideas on how to get her past this? TIA! Link to comment Share on other sites More sharing options...
Hopeny Posted December 23, 2012 Report Share Posted December 23, 2012 (edited) My daughter has joint pain, along with some muscle and bone pain from Lyme and co. Typically the joint pain is in mutiple places but not bi-lateral, eg left hip and right knee. The exception is the soles/heels of her feet which both hurt, we believe from a Lyme co-infection. My daughter also has nerve weakness from Lyme. Her legs frequently feel shaky. You may want to check all of your daughter's joints to see which ones tender, you can check by pressing around the joints, including the knuckles, and asking what hurts. The wrist problem you describe may not be pain but may be a nerve problem. Unfortunately sorry to tell you not much has helped, we have tried everything from epsom baths, heating pads, cold packs, aspercreme (I got a number of warnings on this but I was pretty desperate) and motrin - I say these are all worth a shot though. She did have some temporary resolution while on Biaxin, Biaxin has some anti-inflammatory activity, but the pain came back. At the worst she had to use a cane to walk, with treatment it has improved somewhat. I asked my orthopedist if he could prescribe Voltaren but as she is under 12 he could not. Voltaren is like a topical motrin which I have used and found to work extremely well, but you have to be careful with it as you can't use motrin at the same time. If my DD was older I would be using Voltaren. We have started her on the following supplements under the care of an integrative doc to address this problem: Quercetin, Fish Oil, Enhansa, Vitamin C (she has a phosphorus deficiency so this is supposed to help). The doctor also said we can try Bone Health by Nordic Naturals. Finally I bought some Arnica at CVS but chickened out using it, some people do though. I posted on the Lyme board in regards to joint pain, you may want to read some of the posts. LLM uses another supplement I cannot recall the name of but was helpful. It's extremely hard as a parent to see your child in pain and not be able to help, so I would say try everything. Good luck Edited to add: covering all the bases, I recently also bought DD a magentic bracelet that is supposed to help with pain and I will admit I bought a healing crystal that I have put under her bed. Admittedly I am totally desperate to help her. Edited December 24, 2012 by Hopeny Link to comment Share on other sites More sharing options...
LNN Posted December 23, 2012 Report Share Posted December 23, 2012 Hope - I think the supplement you might be thinking of is glucosamine. It's commonly used for joint pain in arthritis, easily found in any local CVS/Walgreens/Walmart in the aisle of arthritis remedies. We used to use it pretty frequently a few years back when DS had muscle and joint pain and the things we were doing for Pandas didn't help. Motrin helped for other symptoms but not for the pain. I eventually stopped using it because the relief wasn't long lasting for him. Surfmom, like HopeNY, we eventually found that my son had/has Lyme. His pain has largely gone away with treatment, tho it does return whenever we change abx or get aggressive and provoke a herxheimer response (a worse before you get better thing caused by the toxins of dying bacteria). At the very least, you should have your child tested for Lyme using a standard Western Blot test from your local lab. However, be aware that this test is notoriously inaccurate and if she has additional pediatric Lyme symptoms http://naturalnutmeg.com/?p=1677, you may want to do some additional research (start by reading the helpful threads at the top of the lyme forum). My son, like many, tested negative on the standard western blot but showed 5 bands on a similar test from a lab called Igenex, which looks at certain antibodies that the standard test does not look for. So it's something you may need to hunt down rather than relying on first results. But still, the standard WB is inexpensive, widely available, and if you get any positive bands from that, you may not need to move on to the more expensive tests. The weak grip may be a neurological symptom. Our neurologist tested DS by having him do a "milk maid's grip" where he had to squeeze her two fingers as tight as he could. But the cause of the weakness isn't clear. Pandas, Lyme and several other illnesses can all cause a weakness. Link to comment Share on other sites More sharing options...
SurfMom Posted December 24, 2012 Author Report Share Posted December 24, 2012 Thanks to both of you. She has had extensive Lyme testing but her symptoms keep coming back to this possibility so we will be addressing it when we go to Dr. M in Jan. We are treating her aches on an as needed basis with Motrin but it really isn't helping. She was up most of the night which means we are off to a rocky start this morning. The hardest thing right now is keeping her moving. She wants to be immobile which exacerbates the stiffness. I will report back once we find out more, Link to comment Share on other sites More sharing options...
pandakid11 Posted December 24, 2012 Report Share Posted December 24, 2012 My son has bad pain all over and is negative for lyme. It is all somatization from the anxiety, I think. Not sure, though. Been to too many doctors and no real answers. You are not alone. Take care In week five of the exacerbation that won't quit. One of the symptoms that won't let go is joint, particularly wrist and arm pain. Her grip is very weak. Anyone else experience these symptoms of have ideas on how to get her past this? TIA! Link to comment Share on other sites More sharing options...
JuliaFaith Posted December 24, 2012 Report Share Posted December 24, 2012 This may sound odd but bee venom in a tube has worked very well for me on joints. Can only use on closed areas and stings a little when you first apply it. Leave first coat on until you feel stinging then massage into skin. Huge anti-inflammatory! It was $50 for small tube thru dr. office. Really not kidding! . From Apitronic services, Richmond, BC. Have used it for all kinds of injuries ect. too. Skin turns red but goes away after a while. Want to watch for allergic reaction like anything else. Take care. Link to comment Share on other sites More sharing options...
kos_mom Posted December 26, 2012 Report Share Posted December 26, 2012 DD has spasticity in her legs and takes baclofen, a drug most often used in MS patients. It allows her to walk almost normally, but she still has pain, mostly in her knees. We're still searching for solutions to this. Link to comment Share on other sites More sharing options...
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