Ok, so for two days now, I have been having such horrible pain in the middle of my back and pain in my right hip (upper thigh near the joint). I am walking very slowly. I had a hard time sleeping last night, no matter which way I tried to lay I was very very uncomfortable.
I bend my neck and it feels worse in my back. I don't know what to think of this, because I haven't done anything that would have me in this much pain for no reason. It just came on and hasn't let up. I am on zanaflex for spasticity and just about ready to take it!!
My question is,,,,,, I know that spasiticy can be seen in ms, but can it also be caused by lyme, and does it present the same way, meaning come on outta nowhere???
Yep. odd that you mention that as lower back pain was my 2nd symptom. And last night and today my back hurt again. Hard time sleeping no matter which way I turned, not like a pinched nerve where you can find that "sweet spot" where it dosen't hurt. This was anyway I moved.
Sometimes my Archilles hurts like $%^&, then my hips, then my shoulders, then my neck,etc.
Thanks guys. I took my zanaflex, fell asleep and woke up with pain still. It hurts to take a deep breath, I feel it in my back. If I am sitting at my kitchen table, and try to lift my leg up, I can't, I have to lift it up with my hand because the hip/joint pain is awful.
I can't wait for my endo. appt. next week to discuss lyme and llmd with him. I try to read as much as my eyes can take, and I am thouroughly convinced that I have had lyme disease for more than 20 yrs. It's the only logical explanation beside ms that fits all of my ongoing issues.
I am on pg. 400? something on" cure unkown." I have a hard time following some of the chapters as they tend to go back and forth from one scenerio to the other and then I forget what i just read. I have a ton other questions, but I will not bombard you guys with all of them at once. LOL
Yeah, the Dr that had been diaged and written off with ALS really got to me. Makes ya wonder just how many are not diaged correctly.
Today, 2 more women w/ "female probs" I talked to. One w/ a Hysterectomy, the other just diaged w/ uterine cancer. She was missdiagnosed w/ MS for 15 years. Just stand your ground Pam and don't let them pidgeon hole you until you show a neg IGENEX test for Lymes /coinfections and Mycos.
You have the wheels in my brain turning again...... lol
About the women with the "female probs",,,,, everytime I have a pap, it comes back abnormal. and then I am retested and told I am in the clear. Just recently I had to redo my pap, becuase it was abnormal, 2nd time abnormal again, I just had to redo it.
I also have ovarian cysts and fibroids on my uterus. What is up with that? I had a lump in my left breast removed at the age of 27. I always have breast pain, and have attributed it to my scar tissue from the surgery.
I have asked in the ms forum regarding yeast infections and if people experience this more often. but now I am wondering if all of this crazy stuff that is going on with me has anything to do with it. I am a clean person, and try to take care of my self and eat good, but of course, something isn't balancing out right in me.
I am definately going to suggest Lyme Literate DR. and IGENEX and I will not settle for anything less.
The woman that was misdx'd with Ms,,, did she actually have lyme?
Thanks ewford , so glad to have your input! :)
Pain in my back still going strong. Can't shake this pain, no matter what!
Just be aware that while Igenex is one the best labs, it still isn't always accurate. My Igenex test was negative and I found out by another test through Fry Laboratories that I was positive for Bartonella. Lyme Disease and other tick-borne illnesses are a clinical diagnosis and no diagnosis should be made solely on a test result. So, a negative Igenex test still does not mean you don't have Lyme or co-infections.
I hope your pain subsides. Good luck pursuing a LLMD.
I agree, no tests are perfect, and some are not very good at all.
IGeneX is better for Lyme than ELISA and W. blot, but even those have their purposes. The important thing is the doc *reading* the test in conjunction with your history and symptoms. And LabCorp is often used for the nonLyme testing, at least that's what my doc used and I often hear mentioned.
Don't feel uneasy about bringing up your yeast infection. It's not your fault, and getting a systemic (not just v*aginal) infection is not uncommon in some people for genetic reasons. Been there, done that. Docs don't seem to take it seriously, unfortunately.
Pam, I have some female friends from facebook. One is Amy Hill. She was the one missdiagnosed as having MS for 15 yrs. She did get ABX to stir up her immune system and after 15 yrs, she showed pos on a Western Blot, which is not unusual. She went to her Gyno and thats where they ultimately found the Uterine Cancer.
I truly feel that people diaged with MULTIPLE AI diseases actually have Lyme and coinfections/mycoplasma infections. Especially if the symptoms are all over the place. How can you have an accurate test when the govt supplied "criteria results" make it virtually impossible to test positive.
And the reason I feel that we are being ignored is that if it was known a bacteria the size of a virus was causing all these AI like illnesses and it could be cured w/ ABX. The goverment does not want a SUPERBUG.
AND, the medical establishment makes TRILLIONS of of medicines, doctors, labs, equipment, research grants, etc. There is too much $$$$$$ flowing. It's too big to stop.
Alot of it missunderstanding/missdiagnosis.
AND the possibility that maybe Lymes and Mycos are/were bioweapons that got out of control, and the Govt is covering this up by missinformation at the top level of Medicine. You cannot deny this as at least a possibility. There is too much evidence.
Unfortunately, Lyme/co-infections can be very painful. I've experienced sharp localized pain, shooting pain, incessant dull pain...I've had pain in my eyes, teeth, muscles, bones, ... I know you've mentioned Bart in some of your posts; Foot/shin pain is something of a hallmark symptom of that co, and I've dealt with that for many years now. (At times it got so bad that I could hardly walk anymore.)
I don't know much about Lyme/spasicity specifically, but sure Lyme can get into the tissues and cause a lot of cramping and pain in the muscles. I get this the most in my calves, but think my back has suffered from it as well. Over time, I also developed myofacial pain syndrome, in which the muscles take on characteristics of connective tissue. As a result, I have dozens of little knots of inflammed muscles in my back and shoulders, which can be very painful at times.
Back/hip pain can have lots of different causes, so this is not to say that what you are experiencing is definitely Lyme. I don't know if you like chiropractors, (some people hate 'em, some love 'em, I'm in the latter category) but that could be an option to explore for assessment/treatment of your pain.
I've also noticed that any injury feels worse when my Lyme flares, because of the inflammation caused by the illness. So even if your pain is not directly from the Lyme, it could be a secondary effect that a minor injury feels major due to the extra inflammation from infection.
I had twitching and muscle cramps that were relieved by taking modest amounts of magnesium supplements. I have read that any magnesium supp ending in "-ate" is most absorbable, and have tried different varieties. The one that works best for me is a brand that calls the supp "Magnesium CAO", which means it has three varieties in it: citrate, aspartate and orotate.
Wonko has good advice above -- I haven't had such significant pain as she has, so a little magnesium that works for me might not work so much for you. Everyone is different.
ree- Thank you very much for sharing about the test and its inaccuracies. I appreciate everyone's input and will make sure I let my doc.s know that I am aware of how some of these tests are not always going to prove this one way or the other.
Jackie - Thanks for the info. on the supplement. I will look into it. My muscles twitch and spasm all of the time. Mostly my left thumb, arch of my left foot, and left shoulder. My spasms usually occur in my neck, back, and right thigh and right hip. So, I will definately give it a shot.
Wonko - I have had the TN type pain, short burst of pain hit me in the face and then gone. Happened to me couple of times on the left side of the face, and then couple months later it struck me on the right side and down deep into the inside of my ear. I thought I had an ear infection, so i went to see the doc. and that was not it. Wow, did it hurt. I would just grab my face, sit quietly, and wait a few seconds for it to go away. NOT FUN!
I just got over a sinus infection couple of weeks ago and was having terrible eye pain. That pain radiated to the back side of my head. (base of head)
I have had a dulling ache behind my right arm. Felt weak, and just a dull ache. Not sure what that was.
As far as foot pain... The only time that I can remember was last,,, fall??,,,, I think. I was sitting in my recliner chair with my feet crossed over and I had heel pain on both feet. I had to keep repositioning my feet because it was hurting so bad.
ewford - Thanks once again... I was watching the news this morning, and I'm sure you already have seen it or heard something about it, but there is now a new ameoba?? that can kill children, if they go into certain water that was affected. At first before they said what it was, I only heard bits and pieces and heard infectious disease, and I was like, OMG, turn up the Tv. I cannot believe it.
I hate feeling this way. I am not a complainer, just a seeker for answers.
I can relate to the "TN-type" pain, though thankfully it's been awhile for me!
The fact that it switched sides so suddenly sounds (to me, a medical lay-person) consistent with infection.
I have at times experienced very sharp pains radiating from my mouth into my ears in bursts. Sometimes, just my ears hurt, too.
I'm also familiar with pain behind the eyes, drilling and sharp, worse with eye movement. Scary stuff. But I went to an opthamologist who could find nothing wrong with the anatomy of my eyes, and my brain MRI's didn't show lesions on the optic nerve.
The sharp eye pain is mostly gone for me, but I still see flashing lights in my peripheral vision when I move my eyes side to side (I must be in a dim/dark room to see it). And my vision still blurs when I get tired, and used to blur when I got too hot.
I never used narcotics for control of my painful symptoms. I did at times used neurontin with partial success for nerve pain. As I'm sure you know from the MS forum (where I was at first on MedHelp years ago...) regular pain medications (like aspirin) won't touch nerve pain. However, it is really difficult to balance the benefits of neuro pain meds against the many side effects, and I eventually quit. But it is an option you may want to consider. To my knowledge, neurontin will not worsen Lyme/infections.
It is understandable to seek satisfactory explanations to these occurrences. There is a lot of cross-over between Lyme/co-infection symptoms and other conditions. Worst yet (or more dangerous, IMO) is that if doctors suspect anything auto-immune, they may put you on steroids even if you don't have a firm dx. And steroids are simply terrible for an infected person!
I bring this up as a caution in case your doctors offer you steroids to control your TN-like pain or other symptoms. I was given a few weeks worth of oral prednisone while undiagnosed and while I felt great for a short time, I then quickly worsened. I can't say for sure that I'm better now than I was before the steroids, and that was about three years ago! I've read lots of testimonials of Lyme patients who were given steroids before being diagnosed, and it is always catastrophic.
As for complaining, go right ahead; you are entitled! We all understand here that complaining about what is greatly impacting your life does not make you a malingerer. I don't like to be told or made to feel that my problems are trivial, so I doubt anyone else likes the feeling, either. My way of thinking is that sure, some (lots) of people have bigger badder problems than I do. But I can maintain my compassion for other while still having valid concerns about myself.
Hey Thanks. I wish i could remember anytime I took steroids how I reacted. I cannot remember.
After I had Radio Active Iodine treatment for my thyroid, I think they put me on oral steroids, but cant remember, it was 2005.
I just remember getting sooooooo sick that I was almost dead, literally. My skin was grey, I put on 16 lbs. in two weeks, I began to slur my words, I had sore weak muscles, extreme fatigue, ( I could have slept all day if I didn't have my son at that time) even taking care of him was hard to do. I was very irritable, couldn't think straight and just wanted to stay in a dark quiet room.
My doc. put me on synthroid right then and there and then had to take cytomel to speed up the process because I was in the danger zone. I could have slipped into a coma (as my dr. said) had I not started the medicine.
I appreciate your kindness in sharing with me. I am so grateful to have you guys.
Jemsek told me the biggest mistake reg Dr's make is not suspecting poss Lyme and putting someone on Prednisone or like steroids. It totally dissables ANY response your Immune system is trying to mount and lets the bugs get an even greater foothold.
I should prob. ask my surgeons that did my eye surgeries, and my endo regarding the RAI if they put me on steroids during that time. I know I have been on them, but its always during a time that I am already having problems so I never thought about it at the time and can't remember any other reaction. Thanks for the info.
About the steroids, it is what it is at this point, and while I'm not medically trained, I would think it's interesting historical data whether you were given steroids, but would not change what you do going forward. To my understanding, steroids suppress the immune system for a relatively short period of time, not permanently.
May I ask what thyroid supplements you are on currently? T3 and T4, or just T4?
Let's see, right now my synthroid that I am on is .75 for 4 days and then .88 for 3 days. I was changed just about 3 months ago. I was . 88 even days and .75 odd days for about 6 months. I haven't had it the same for 8 yrs. now.
My back pain finally let up. Yay, hip pain lingering alittle, but I can walk ok now. Two more days and I see my endo. so I can discuss my referral.
That's interesting about your thyroid meds -- I hadn't heard of varying the dosage like that, but then I'm pretty new to it all myself.
T4 = the chemical levothyroxine. The brand name is synthroid, which the body has to break down into parts to be usable. One of those parts is T3, the name is cytomel.
I've learned that some people don't efficiently break down T4 into T3, and the tests aren't all that great in identifying whether someone's body can do the breakdown or not. Standard approach, from what I read, is to dose with only T4.
My doc has me on both T3 and T4, and it's amazing stuff. Lyme can apparently affect thyroid function, from what I read, but of course, Lyme isn't the only cause of thyroid deficiency.
After I had my RAI treatment in 2005, my doc's had to put me on a higher dose of synthroid, I think is was 125 and they put me on cytomel to speed up the process because I was soo very sick. It did work amazing. I haven't had to take cytomel since.
But in all reality, my treatment for my thyroid has been hard because I fluctuate all the time. I have to see my endo every three months, some people that I know only have to see their endo. every 6 months or even once a yr.
During one of my blood labs, my doc. called me to tell me that my antibodies are very high. I thoght at that time it was when my eyes were starting to bulge. I thought that since the thyroid was destroyed with RAI that the antibodies were now attacking my eyes and that was why the blood work showed that they were high.
Who knows?? lol I feel like I am a complex case. he he
It's amazing I can still function.
Have a great day,
My doctor had me on Armour which I guess is like the natural version of Synthroid and now she switched me to cytomel. Armour wasn't doing anything for me so it's possible I am one of those who don't convert T4 into T3.
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