When I first became sick, my pain started in my shoulder blade and spread from there.
Now, (fast forward nearly 2 years) 95%+ of my pain is in my legs. Not joint pain so much, but muscle and nerve & tendon pain.
Am I correct in thinking that most of us have leg pain going on.
What percentage of your pain is in your legs?
Does anyone know why?
Posted by cantgiveupyet (Member # 8165) on :
mine is in my pelvis, and hip flexors... it didnt start there for me either.
I wish i knew why it settles in certain spots.
Posted by ICEiam (Member # 7519) on :
My Daughter's is her head and her legs. I have seen her sit on the floor and pound her legs with her fists.
Of course I try and get her to stop and maybe get into a warm bath or put something on them like Icey hot, epsome salt or something.
Between her head and legs she just looses control and can't stand the pain at times. I feel so helpless at these times.
I wish I knew of something that would help ease this pain. Believe me, we have gone through about every drug known to help that sort of pain and nothing helps.
HUGS,
Posted by Bugg (Member # 8095) on :
I've had an awful time with pain (felt like a toothache) in my legs...I've had severe inflammatory problems...Things that have helped my legs feel better:
1) treating for babesia (still on this treatment) 2) taking periodic, low doses of Pediactric Benadryl for the inflammation during really bad herxes 3) taking a baby aspirin a day, plenty of Omega 3 Fish Oil, and Blueberry Extract for the inflammation....
You may want to ask your LLMD about the aforementioned....
Posted by GenaD (Member # 11988) on :
I'm another one with the leg pain, and it didn't start there, either. It was mainly in my neck and shoulders.
Now it's in in my pelvis and groin down to my knees and it gets so bad it makes me nauseous.
I refuse to take heavy duty pain meds, so I haven't found much relief!
Posted by jmo (Member # 13141) on :
I agree with bugg...
It felt the exact same and the pain in my legs is babs... Treating for babs is a key.
Posted by jamescase20 (Member # 14124) on :
Lyme enjoys low temps. Thats believed why its rare near the equator. Its well known, 106 temp for 24 hours will comp kill lyme...but persons have died from the fever. Early treatment was (for marira) soak in 106 water for 24 hours. Back in the early 1900's but doctors would loose 'em from the high temps., but the ones that didnt die from the treatment experience total cure. Lyme lowered my body temp down to 95.9 via pituitary axis destrction. Legs are extermities. Perhaps its cooler down there. Like already said, maybe co infection. I have bart 1 and lyme and dont have knee or leg pain, but feet hands...well, pains everwhere actually. uh. Usually not continuous though...pinging.
Posted by lymebytes (Member # 11830) on :
You know, I tested neg for babs, but have wondered if I have it. I don't have "classic" symptoms, night sweats etc., but I better go over this again w/my LLMD CRUUUUUDDDDDD!!!
Posted by jamescase20 (Member # 14124) on :
In live blood microscpy you can see the babes is swimming in small circles locked in the red blood cells...bart swims anywhere or on the outside of the cell...lyme tends to hover and swim slowly. U may have to wait overnight for visual of the babes...they may be blocked from visual till the red cells die and babes crawls out of the cell.
Posted by mtree (Member # 14305) on :
.....leg pain is horrible..... the pain can be very dibiltating....
I know for me the best remedy is for my husband to rub them....actually put pressure on them...squeeze them gently..... it really makes a huge difference for me..........I sometimes have my dog just lie on them...... I also suffer from restless leg syndrom.....the rubing also helps that tremendously.
mtree
Posted by Robin123 (Member # 9197) on :
I reduce pain in my legs by running hot water over them from the tub faucet, elevating them over my head against a wall, and waving a red- light hand-held tool around called a Tri-Light, with three red lights on it that I think increase oxygen flow under the skin.
Posted by adamm (Member # 11910) on :
jamecase20--
I thought Lyme Bb didn't start dying until you hit 108.
Posted by Tracy9 (Member # 7521) on :
Had Lyme for 7/8 years that would come and go, but common symtom was deep pain in legs at night.
After getting to a LLMD and getting tested and Dx for bart & babesia things are getting better. after treatent Mepron & Zithro for appx 6 weeks pain has gone away- completely.
Also asprin is good daily + try stretching.
Lay on your back, take a belt with the loop on and hook it around your foot. With your leg stratight pull your leg towards your body.
Streatch and relase,.......
Alternate legs and do for 3-20 min. Will reduce pain.
I think you have Babesia- that is where the leg pain is comming from.
Posted by mushroomman06 (Member # 13088) on :
Have off and on pain in legs that will not go away. LLMD says I probly have had LYME for sometime. Always had aching legs and other muscles.
When LYME came full blown last Feb. had strong pain in right shoulder, neck, and chest. The pain in shoulders is still present, neck pain has not appeared for sometime.
Tore right archiles tendon in half in 89 and then left in 93. There where no answers for this to happen, asked if I used steriods, which I didnt.
LLMD says the tearing could have been a result of LYME. It sure tears one body down!
Posted by Stacyb (Member # 13084) on :
Does abx treatment contribute to leg pain or is it the lyme it's self that causes it? Just curious????
Posted by bettyg (Member # 6147) on :
to the person with groin pain, have you ever had knee and HIP XRAYS taken to see if you are down to BONE ON BONE?
i did last year, and my left hip was replaced. 9 months later, my groin pain finally left me! Posted by DakotasMom01 (Member # 14141) on :
The leg and arm pains can be caused by spinal problems also.
Lyme can cause degenerative discs, which can affect various nerves.
A herniated/bulging discs in the lumbar spine can cause pain in the toes.The Sciatic Nerve is here, that goes down both legs. Could also be a bone spur pressing the nerve.
Hip and pelvic pain can be fron an inflamtion in the sacroiliac joint.
A bad disc in the neck can cause headaches, arm pain and twitching.
Hand and arm pain/numbness aka Carple tunnel, is nerve entrapment.
Knee pain can be a torn miniscus ring, or a bone spur.
With all that Lyme does to us, sometimes it is assumed the symptom is cause by Lyme or a herx.
Its possible to have injured yourself, just moving the wrong way. Since Lyme depletes us of so much.
The only way to know would be to have MRI's done if the pain continues a long time. Just another point of view.
Hope you feel better soon.
Posted by dg0207 (Member # 15623) on :
Hello All:
My symptoms started just like Lymebites.
It began last February 08' with achiness in my left shoulderblade area. Then I began feeling burning sensations throughout my body. Into March the aches migrated up and down my central back and into my ribs and deltoids.
Into mid April it progressed into my legs (quadraceps and hamstrings)
Today I have full blown flares of muscle pains.
The most disturbing part is the tightness, fatigue and straining sensation in my legs.
Good luck all.
Dave
Posted by tailz (Member # 10014) on :
quote:Its well known, 106 temp for 24 hours will comp kill lyme...
Now there's an idea. Hmmm...
Posted by Peedie (Member # 15355) on :
Extreme pain in both legs and in pelvis area. When pain is most intense I also have radiating nerve vibrations (for lack of better description) which are constant and most intense at night while trying to sleep. Leg pain is in muscle-not joints and is to some degree ever present. On a scale of 1-10 10 as worse pain, over last week and half I have been a steady 4 or 5. Over the last month I have been taking Hylands RSL herbal tablets (let disolve under tongue)at bedtime. I use Absorbine Horse Liniment when it's real bad - both legs (make sure you didn't just shave). Also started with CoQ-10 and L-Carnitine and asprin daily. And Ribose for exercise because a poster here mentioned it was good for leg pain. Don't know if any of this made a improvement on the pain but thought I should mention it since this is the longest I have gone without pain reaching in the 8-10 level. If pain wakes me in the night - doing the "flutter kick" while lying there or walking will bring it back down to a tolerable level. My husband and I of course can't sleep together anymore. My daughter is on a Gluetin-free diet and feels healthier so I have also been on same diet for about two weeks. Not much improvement on small of back pain though. Anyone get that as well? Horse Liniment there also. Have a good week-end everyone - painfree I hope! Peedie
Posted by lymebytes (Member # 11830) on :
You must have been searching leg pain to have this one come back around?
Since my post in January, I have been on Bicillin and it slowly seems to be relieving the leg pain...I am amazed.
I am hanging in there this time, I only made it 7 weeks before, but I think Bicillin takes months to see benefits.
Posted by dg0207 (Member # 15623) on :
Hello All:
For all of you with leg pains, do you folks experience burning sensations throughout your body along with sometimes stabbing pin pricks and muscle twitches?
I don't know if they are separate issues from the leg pain or if it is all related. Perhaps they are neuro-Lyme symptoms, not sure.
Please comment.
DG
Posted by lymebytes (Member # 11830) on :
dg, yes had it all. Try taking magnesium 400mg per day for muscles.
Stabbing, burning, pin pricks is neuro - ask LLMd if you might benefit with neurontin or lyrica.
Take care.
Posted by dg0207 (Member # 15623) on :
Hello all:
About 3 weeks ago my leg muscle/tendon pain was so bad that I could not bear any weight on my legs without feeling like I was doing some tissue damage. The twitching was also so bad that someone mentioned to me that I may have had an MS flare.
Since that time which I hope was my "bottom," I attacked yeast with diflucan, began physical therapy, along with stationary bike at home, also began a supplement regimen w/ multi-v., amino acid combos, coenzyme Q, creatine powder, good probiotics and sleep aids to get restorative sleep.
I am also treating my state of depression as well. I believe the mind has many healing capabilities if given the chance.
I think the supplements and getting good aerobic workout on the bike are key. I was afraid to push the PT and bike thinking that I would hurt myself further, but it seems to be working for me.
I still get the tight tendon sensations (right leg & groin) and stabbing pains in my quads and walk awkward at times, but the symtoms are not nearly as bad as they were 3 weeks ago. I am not sure if I am dealing with fibromyalgia at this point. Muscle twitching also has been almost non-existent.
I will not accept this condition and will not give in to believing that I may have something chronic.
Get well all. Stay positive.
Dave
Posted by lymebytes (Member # 11830) on :
Dave - I'm glad you have made progress. Are you also on abx and in LD treatment?
Fibromyalgia is simply fibrous tissue pain - a symptom caused by Lyme Disease.
Remember Fibromyalgia (as mainstream Md's believe) is chronic condition with no hope and there is no cure is what they teach. Knowing it is Lyme you stand a chance if treated correctly.
DG - interesting how your LD started like mine, not fun and to have it spread everywhere is a mind blower, unreal. My legs were hit last and I couldn't believe it and have hurt every since. Bicillin helped for awhile - but now I think it makes leg pain worse. Biaxin seems to help it though. My LLMd believes it could be Ehrlichia related or Bart - but I have tested over and over negative for Bart since being on Biaxin (see many pubmed abstracts of treatment of Biaxin for Bartonella, Biaxin and Zith both proven to kill many strains).
When I stopped Biaxin my leg pain got worse..but I do know for a fact I have Ehrlichia and haven't touched the co-infection and if I could..that might help, but I am having trouble with all meds that kill ehrlichia.
Also, my LLMd says symptoms of co-infections overlap so much with lyme it is nearly impossible to know what causes what.
Although Babesia treatment has helped some here, and Babesia is about the only co-infection that is fairly cut and dry with symptoms fairly obvious...I don't think Babs is my issue, I don't have "classic" symptoms, not one. So it has to be LD or ehrlichia related for me anyway.
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