posted
I had the same unexplainable joint pain for years, even though I was active, fit, otherwise healthy, exercised regularly, ate right, and had no swelling or arthritis.
Joint pain for no real reason is one of the hallmarks of Lyme, along with fatigue and foggy thinking. Of course, there are another 50 or so possible symptoms.
I think most of the joint pain comes from muscles that are in a constant state of irritation and inflamation due to the toxins released by the Lyme bacteria.
The muscles then cannot relax and are constantly pulling on the tendons. This causes pain in the joints because that is where the tendons attach.
For about 4 years, I had joint pain in multiple areas, especially my extremeties. I had elbow surgery for "tendonitis," but the surgeon found that my tendon was fine! The problem was that my forearm muscles were inflamed, irritated, and had developed adhesions, which made them stick together.
During physical therapy, they had me doing repetitive exercises, which just made me worse. Like you, I then got to the point that I could not pick up a pen without pain shooting out of my elbows.
I highly recommend the Trigger Point Therapy Workbook. It helped me tremendously in working the kinks out of my muscles.
I am much better after being diagnosed last year and treated for Lyme. I was on abx for about 5 months before I began to see improvement.
I have tried to go off abx twice since then, but the muscle stiffness and pain started coming back. I am back on Doxy again and have recently added Cipro because we suspect I may also have Bartonella.
you described to a tee what i have been thinking. For a while I thought the pain in my joints was attributed to bone. but the longer i live with it the more i know it is a tendon thing. it has even traveled from my shoulers down my bi cep tendons and from my hips, down my hamstrings. it seems to change locations within my shoulder. does yours do that?
Posts: 72 | From West Virginia | Registered: Oct 2009
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my left knee is all the time. rarely swells and when it does is not the OMG swelling, just taunt skin and I know.. internal pressure is worse. luckily- my Dr's have believed me. all except the ortho ! HA! MRI and bone scan on that knee showed lots of cystic changes but ortho cleared me of bone cancer and other than that has no idea what to do. recommended PT that had been doing already. Now that leg gets motteled , and area of pain has spread. the bone chages to femur and tibia IMO ARE important. I am only 33, too young for that (spine too) ... idk,,,, another piece of puzzle.
did steroid shots pre-lyme dx. and made worse so dr just thought didnt give enough...lol..so now is REAL messed up. the steroid shots did my knee in, that pressure the shots caused never went away. LLMD "gets " it. i am a walking baromoter !!
i use pain dr, neruo, LLMD, and PCP/internist.
right now riding the wave of acricept getting rid of all the other aches/pains i usually have all day.. ejoying the ride ... acetylchoine is my new B.F.F...lol
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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Pharmenex Flex Creame DOES help. is internet only and on Dr B' Guidelines. My whole family uses it now
also for me, acupuncture had done wonders. not all are the same so, took me trying new lady to find one who really helps me now.
i will look into the cinnomen/ honey though, whatever works and more natural the BETTER !!
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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posted
i have been taking ibuprofin for about two months now. it provides a little help but, i need to quit because it is so bad for you but don't know what else helps. at night before bed when its really bad i take a 5.5 hydrocodone.
Posts: 72 | From West Virginia | Registered: Oct 2009
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posted
Keebler- I don't know what an ID doctor can offer, but that's who I was referred to.
I am newly dx with Lyme, only 3 months now, and am just now really starting to "teach myself" or should I say, "learn from all of you" about the disease, since the 5 doctors I have been to so far have taught me NOTHING.
I have decided to go ahead and see the LLMD in my town, which I just now learned about, rather than listen to the few negative things I have heard.
From what I learned here, any known LLMD has to be better than the ID I was seeing. This lady seriously told me it was probably still a false positive after THREE WB tests and all my symptoms.
I also agree with the talk about the pain moving about the body. One day my pain will be in my back, then next day or week, or even month my neck, then knees or fingers, or like today EVERYWHERE. I also have to take hydrocodone just to get thru some days.
-------------------- 7/09- WB IGG Neg all bands -WB IGM Pos bands 23 & 41. Treated w/ 21 days of Doxy. 10/09- WB IGG Pos bands 41 & 58 -WB IGM Pos bands 23 & 41. 04/11- WB IGG Pos band 66 -WB IGM Pos bands 23 & 41 Pos EBV. Posts: 121 | From Western PA | Registered: Oct 2009
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posted
Keebler, WOW! lots of reading there. i just saved a copy of the supplements guide to print out tomorrow at work. here is a stupid question i probably already know the answer to but...Before bed a couple of stiff Bourbons help me get to sleep. how will that affect the doxy?
Posts: 72 | From West Virginia | Registered: Oct 2009
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-------------------- 7/09- WB IGG Neg all bands -WB IGM Pos bands 23 & 41. Treated w/ 21 days of Doxy. 10/09- WB IGG Pos bands 41 & 58 -WB IGM Pos bands 23 & 41. 04/11- WB IGG Pos band 66 -WB IGM Pos bands 23 & 41 Pos EBV. Posts: 121 | From Western PA | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- johnnywv,
"a couple of stiff Bourbons"? At first I wondered if this is comic relief - but I guess not every doctor remembers to tell patients that lyme treatment and alcohol don't mix any better than lyme and alcohol. Or tylenol with a compromised liver.
However, the good news is that when the source of pain is addressed, neither hydrocodone nor alcohol will need to be the last resort for some relief from pain (both of which really destroy the liver, especially in the presence of lyme). If you are kind to your liver it might help you tolerate the lyme medicines and you have a chance for a healthy life.
Really. ============
As this question comes up from time to time, here's a post I kept in my files that better explains the reasons that alcohol is not allowed during treatment and, even if not on treatment, will make lyme worse.
- Alcohol is not allowed at all for anyone being treated for lyme. You will not be able to get well with alcohol for several reasons, one of which is that the liver is dealt a huge blow with lyme and damage can be severe. Add to that the need for medicine and that puts even more stress on the liver.
The lyme spirochete produces one of the most toxic substances known to man, similar to that of botulism. The liver is the primary organ to metabolize those toxins and get them out of th e body. That is no easy job.
Many (if not all, as at least on LLMD thinks) lyme patients have excess porphryrins - from the liver being overwhelmed. The porphyrins, in excess, can kill cells of all types but especially nerve cells. Alcohol uses the cytochrome P-450 liver detox pathway. Patients with the porphyria problems have that pathway damaged to varying degrees so the very best of self-care is vital.
As well, the brain cells don't do well with alcohol. Nor the lining of the stomach. Alcohol really does not mix well with any medicine.
posted
I had no idea about any of that. I do have the occasional drink, but will not now until well. I am a smoker as well, looks like with my lifestyle, I will never get well. I am working on the smoking thing.
Keebler- you sounded annoyed with johnny's questions.... Please keep in mind that some of us are new, not only to this website, but also to the Lyme itself and be patient with our "idiotic" (for lack of a better term" questions... : )
-------------------- 7/09- WB IGG Neg all bands -WB IGM Pos bands 23 & 41. Treated w/ 21 days of Doxy. 10/09- WB IGG Pos bands 41 & 58 -WB IGM Pos bands 23 & 41. 04/11- WB IGG Pos band 66 -WB IGM Pos bands 23 & 41 Pos EBV. Posts: 121 | From Western PA | Registered: Oct 2009
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It's on Amazon too...I paid appr. $13 and refer to it often (for helping others).
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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posted
My fingers started hurting the end of last year to where I could barely bend them. I couldn't open bottles or cut my meat. They never got swollen at all until recently. Now, my knuckles swell and my fingers look huge.
I have pain in my knees too but they haven't swollen up at all yet. The pain is definitely real and it hurts like hell.
-------------------- The advice I give, should not be considered medical advice. My opinion comes from years of research and experience. Posts: 233 | From Somewhere | Registered: Sep 2009
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massman
Unregistered
posted
Keebler said the liver needs to rest.
How right. Chinese medicine says the liver regenerates between 1 AM and 3 AM.
As it works with food, best tip I have heard is not to eat protein after about 3 PM. Breakfast like a king, lunch like a prince and dinner like a pauper.
Eating like that can often lead to better overall energy.
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I have a theory on the legs,knees,shoulders,arms,
(Joints). It is the borrelia sucking the calcium
out to use in their production of biofilm as this
is usually a lot worse once treatment begins.
Biofilm has been confirmed to be loaded with
calcium. I had bad hand and feet pain before
treatment but after starting treatment everything
started cracking and popping, and shoulder pain
severe. I have been replaceing with vitamin E at
600 and going to 800 a day now. Because I have
read reports of the elimination of kidney stones
and cholesterol reduction in its use. So I figure
if it can prevent stones it should be able to
prevent biofilm. My shoulder is getting a lot better.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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It looks like you have gotten a lot of good responses, but to answer your question, Yes, the pain would change locations within my shoulders, as well as other parts of my body.
I think the author of the Trigger Point Therapy Workbook does a good job of explaining that the muscles in the body are connected to one another and that the spot where you are having pain may not be the source of the problem. For example, pain in the front of the shoulder is almost always due to irritation or injury to the muscles in the back of the shoulder, such as the infraspinatus.
The idea is that the muscles in the rear shoulder are irritated and pull the shoulder backwards because they are in a state of spasm. The muscles in the front of the shoulder then are fighting with them like in a tug of war.
Another example is that I had pain off and on under my knee cap for 20 years after being hit by a car while riding a bike. It mainly bothered me when hiking or going up stairs.
It turned out the problem was actually being caused by a trigger point (or knot) in the rectus femoris muscle about 4 inches down from my hip. I did not have any active pain in that spot, but I checked the area per the book and found a knot that was exquisitely painful!
The rectus femoris runs from the hip to the knee. The pain I was having was where the tendon attaches to the knee. It took me about a week to work out the knot, and my knee has been fine since then.
I also had tight and painful hamstrings. I tried and tried to stretch my hamstrings with very little success. The more I stretched, the tighter they got, kind of like stretching a rubber band. I discovered that my hamstring problems were due to trigger points in my gluteous minimus and medius muscles.
The $20 I paid for the Trigger Point Workbook is the best money I ever spent.
The "When to Suspect Lyme" is indeed a good article. I read it previously but had not looked at in a while.
For those with muscular and joint pain, look at the last page. Dr. Bleiweiss mentions that LD patients often complain of heel pain and tennis elbow, are prone to musculoskeletal injuries, are slow to heal, often have focal tender sites in the abdominal muscles, and 95% of the time have tender spots along the shin.
I had all of these problems, but shin pain was one of my first, and worst, symptoms. It went on for years and caused me to cease running. Although I do not have active shin splints now (probably because I do not run anymore), I still have the exquisitely painful spots along the inside edges of both shins.
Working on these sore spots with self-massage seems to help and has allowed me to stay pretty active, but it is kind of like whack-a-mole; you work out one knot only to have another one pop up somewhere else.
The severity of these sore spots has been reduced about 80% by the antibiotics and trigger point therapy. My doctor and I are still fiddling around with different meds trying to get that last, elusive 20%.
Big name for pain here but the cause is really somewhere else is referred pain.
"Myofascial Pain and Dysfunction" is the Bible of muscle work. Written by Janet Travell MD. She was President Eisenhowers physician.
2 Volumes, astronomical prices, incredible illustrations, very detailed info. You may really enjoy reading them. Local library may be best source.
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It is amazing that Drs. Travell and Simons did this research back in the '60s but other docs have not followed through with it or studied it.
The principles are sound and are not rocket science - you massage or kneed the trigger points to break up adhesions and get the blood flowing so the body can heal itself. And the proof is in the pudding, i.e., it works. Of course, then docs and big pharma would not make nearly as much money treating the symptoms.
The Trigger Point Therapy Workbook does an excellent job of condensing Travell and Simons' 2 volume work into an inexpensive, easy to understand, and easily usable manual. If anyone buys the Workbook, I recommend getting Kinko's to spiral bind it for you for $5 so it will lay flat for easy use and reference.
Also, there is a Travell and Simons' trigger point flip chart that I have found very useful.
I also found I needed some outside help with some trigger points but could not find a good massage therapist to help me. I finally emailed the co-author of the Workbook, Amber Davies (her father, the author Clair Davies, passed away a few years ago), and she was nice enough to give me the names of some therapists in my area who had trained with them. I ended up finding one who was immensely helpful.
posted
Yes, I had extensive myofascial trigger point work done in the 90s. No knowledge of Lyme. I wonder if that's changed at all yet. I could contact their training headquarters and inquire.
Posts: 13117 | From San Francisco | Registered: May 2006
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... acetylchoine is my new B.F.F...lol
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