posted
This happens to me randomly. Soaking in epsom salts if you can will help. Take a look at your magnesium intake. You might need to increase it.
I feel this is a herx. I do use my oils topically over the sore areas and ingest oils at bedtime so I can sleep.
Do you have an infrared sauna? Might help.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Judie
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Does the area seem swollen or is it more of a sharp pain?
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GretaM
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Faithful-OK, I do have an IR sauna. I don't know how I will be able to sit on the seat. Maybe if I roll up some towels.
What essential oils do you think are good to rub in?
I have thieve's, frankincense, lemon, lavender, white thyme, eucalyptus, bergamot, Envision, rosemary.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
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Judie-Feels swollen. Swollen symmetrically on both sides.
The nearest thing I can compare it to is when years ago, I went way overboard with the Buns of Steel and Thighs of Steel exercise videos.
It feels like from waist to knees every muscle, especially the glutes, is bruised or in big knots.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Judie
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Gosh, that sounds uncomfortable. I had a time where it felt like I was wearing very tight jeans and couldn't take them off when nothing was on my legs.
It was inflammation. Perhaps something is triggering it that's new that's been introduced?
I'd also see gauge how you're doing once the pulsing is over. It could just be toxic overload.
For me, salt is my enemy. That's a big trigger for edema and my legs swelling (especially the thighs). It hurt to walk and sit. Some meds have done this to me too.
I hope you figure it out.
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poppy
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I agree with faithful. Pile on the magnesium, every four hours. Mg oxide is said more likely to cause diarrhea in large doses, so try one of the better ones.
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GretaM
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Loaded up on the magnesium yesterday and will do so again today.
It helped muscle-wise. The pain is definitely originating from my hip bones. (where the big thigh bones go into the hip bones)
I cannot sit on the toilet still and cannot touch my bum bones from the pain.
This large bone pain in ongoing for me. Bothered me real bad about 2 months ago when I increased IV abx doses and oral abx.
Frustrated. Dose this mean lyme infects our bones as well? Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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poppy
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Confused here, is it muscle issue or bone? Mg will help with muscle. Don't know about bone though. Bone pain is not uncommon with lyme. Mine has been in long bones.
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This area got inflamed on me once. It's better now. I used lots of oils and tried to get OFF MY BUTT more!
Have you tried Aroma Siez or Cypress?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Razzle
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I'd suggest Frankincense & Lavender. Frankincense for the inflammation and Lavender to relax the tissues.
I also find Thieves helpful for detoxing, but it may be too much if this is from a herx, since Thieves also kills bacteria/viruses/fungus/parasites.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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GretaM
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Poppy-i thought it was mainly muscles yesterday, but the magnesium helped to uncramp the muscles overnight.
This morning I can feel it is actually originating from the big bones. Hip bones, butt bones and big thigh bones.
I can press on the muscles today, they don't hurt, but if I press near the bone joints or anywhere near bare bone it hurts like the devil! Still can't sit on the can-just where the toilet seat digs in-presses on my hip bones-makes me curse.
Can't lay on my side-hip bones touching the mattress is agony. Sitting on my duff currently on two down pillows from my bed.
I feel like the princess and the pea
Lymetoo-yes moving around not touching the bones to anything is better but it is difficult to stand so much.
I don't have Aroma Siez, but I have some single oils of that blend...I will try that with carrier and rub it in.
Razzle-I will try frankincense internally. It is YL.
The lavender is not. I do not trust it to take internally.
I will mix it with the single oils Lyme too recommended and see how it goes.
Frankincense really helps me with my seizure-like episodes, hopefully will help with this.
Thanks for the suggestions.
In a real uncomfortable place here.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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I don't know if this helps, but I get pretty bad pain in my ilio-tibial band - all along the side of the thighs which makes it really hard to lie on my side.
I also get pain in my coccyx, plus pain in my butt cheeks which gets a lot worse if I sit for a long time.
My PT told me that the butt cheek pain is in the piriformis muscles - it gets too sore to sit sometimes. When my piriformis muscles get inflamed they then trigger sciatica!
I also get bursitis in my hip area.
My pain gets a lot worse with herxes.
I use a prescription anti-inflammatory gel which helps - Voltaren gel.
Maybe you can get your doctor to prescribe that for you. I use it for my tendonitis too.
I hope you feel better soon!
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glm1111
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It's possible that you may have dead and dying toxins and parasites in the large intestine that need to be flushed out. This could cause a lot of discomfort. I would try a warm water enema or a colonic.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Judie
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"Dose this mean lyme infects our bones as well? "
There was someone in my support group who said she had a bone infection and it was Lyme. She wasn't a a medical person though.
I've had pain that reaches into my bones from Lyme before. It happens in my arm directly under where the first bulls-eye rash happened. It feels like a metal rod is jamming in there deeply.
Posts: 2839 | From California | Registered: Jul 2012
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Symptoms: ___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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Can't find the first link I saw when I Googled earlier.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nefferdun
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It sounds like babesiosis to me too. It causes pain in the large muscle of the thighs, buttocks and back. I would get cramps so bad they made me scream. Then it would hurt as though the tendons had been torn lose. It sounds like you are seizing up and not releasing.
Calcium causes the muscles to contract and magnesium causes them to release. That is why magnesium is good for cramps - IF a deficiency is the problem. If it is babesia, you need to treat it.
One of my horses has a condition that causes him to cramp up in his large muscles too. He broke my back in one of his bucking fitting before I found out what was wrong. ALCAR stopped his cramping. He also had to have his minerals balanced. I had to have his hay analyzed and then correct it. Our area is low in magnesium so that helped him a lot.
But if you have PR, you want to be careful supplementing magnesium.
When I had tendonitis what helped me the most was methionine. I don't know why but on the nights I didn't take it, my shoulder hurt so bad I couldn't sleep.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Last summer I had extreme muscle/bone aches & pains in my whole left arm and shoulder and neck ache. (Also whole arm burning & tingling, neuropathy).
I took turmeric from Source Naturals 2tabs 2x daily with meals, and Kyolic garlic 2tabs 2x daily with meals too.
This probably only helped the inflammation, not the source of the problem, but I had read that Bb feeds off inflamed tissue, and if you stop the inflammation, you stop the pain. It worked.
Since then, these 2 have been part of my daily herbal routine. Also Resveratrol NOW brand made from knotweed helped with inflammation and crosses the blood-brain barrier too.
Chlorella will bind up biotoxins and heavy metals and detoxify your system internally. It is just a food and can be taken with food, or not. Just take away from vitamin C they say. I use chlorella from source naturals, dosage suggested on bottle.
I know these mostly address symptoms not causes, but getting rid of extreme symptoms helped me.
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poppy
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I think it is tricky figuring out which pathogen causes which symptoms. There is a lot of overlap.
Everyone with lyme should read this essay by a former lyme doc. It was written before the coinfections were known very well, so I am assuming these symptoms in the essay could be a combination of tickborne diseases. Still it describes a lot of what we go thru.
This is probably in the links of the stickies but not sure everyone sees it.
GretaM
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posted
Thanks you guys for the feedback.
Poppy-I hadn't seen that link before, thank you for it.
Neff-I have had babs symptoms, but when we have done babs 'challenges', I have not herxed at all. I will be sure to bring up the bone pain to my LL next appt. I am so broke, more blood tests are not within reach. Just started ALCAR Thurs for energy, so bonus if it helps with inflame also.
PR diet will be tricky as I am very anemic and am allergic to most grains and legumes
Nancy-I totally agree on high Vitamin C! I love love love my vitamin C! I did not know that about vit C and chorella. thanks for that I ordered some turmeric, it is in the mail, so I'm trying that when it arrives
Frankincense rubbed on the hips with a bit of grapeseed oil did help.
Gael-could very well be toxins from dead proto/paras. 1 week in on salt/c,and also week after full moon.
Judie-Exactly. Feels like bones have been modified surgically.
Big Stan-Ugh. babs. my fear. that and ongoing anemia issues.
Oceangirl-I think I may have some of that gel around here somewhere....I will try that. also, thanks for the muscle name, I am hoping to see a RMT this week, I will see if that is something that can be worked on without too much embarrassment. haha.
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GretaM
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Lymetoo-YES! The first photo (on the link with the video), is completely where it hurts like a son of a gun.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Greta please give feedback on the turmeric for inflammation and after 5-10 days, pain.
I had a calf swollen with cellulitis before I got the bad lyme symptoms, and in 5 days taking turmeric and Kyolic garlic, it was healed and normal size.
That's why I tried it for Lyme inflammation.
Posts: 254 | From North Carolina | Registered: Nov 2013
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posted
My doc says hip and neck area. This includes buttocks area is babesia or proto
good luck.
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nefferdun
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I am sorry you are suffering and can't get relief. I had muscle pain with babesia but I don't remember having joint pain. I would think you would have a lot of other symptoms if it was babesia, like air hunger, depression, inability to think and weakness.
You do get both muscle and joint pain with protomyxzoa. If it was PR you would probably have other symptoms like extreme fatigue, brain fog, nasal congestion, hoarse voice, nerve pain, pain in teeth or jaw etc. I doubt it would just be what you are describing. I think you would be so tired it would exhaust you to do any exercise at all.
Babesia and PR symptoms overlap. I have heard of some people complaining of insomnia with babesia but I think that is mainly from bartonella or protomyxzoa. When babesia was dominate, I fell asleep when I didn't want to.
When I got tendonitis from levaquin, my shoulder hurt so bad I had to sleep sitting up for 5 months. It was the methionine that helped stop the pain and it worked fairly quickly. On the nights I did not take it I hurt so I know there was a connection. I would get up and take it on those nights.
It is a precursor to SamE. SamE might help just as well or better. Here is something I found about methionine. "Methionine has a number of benefits for the body. It can treat depression, inflammation, liver diseases, and certain muscle pains.
It is beneficial in people that are suffering from estrogen dominance, where the amount of estrogen in the body is excessively high when compared to the opposing hormone progesterone. Methionine converts the stronger and carcinogenic estradiol into estriol, the “good” estrogen."
It has a lot of sulfur, which is not good if you have CBS but that did not seem to affect me.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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GretaM
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Sorry mean 9 day cycle.
Yes very fatigued too.
Napping when I stp moving.
Triying ALCAR and provigil. Not helping.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Jamers
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posted
I had this a long time ago and now its back. It came back with my starting Samento and Cumanda and parasite meds. It was so bad I couldn't sleep. Mine is the muscles in the back of my thigh. The whole muscle from my knee up. I have heard of this being a symptom of Babesia but I feel it could be bartonella being that I am taking Cumanda. I wish I knew. What are you taking/treating?
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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Catgirl
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Greta, I get this too in one buttock (sitting too long, or from work outs). Also higher up (bursitis area). I think there could be several things going on (lyme in the area, babs, proto, parasites).
I know this sounds counter intuitive, but my chiro presses with her thumb on the sore points slowly, so now I do the same (it works). It is agonizing, but it quickly goes away after pressing it out, which makes me think lyme, babs, proto or something settles in there. Also, my mag is fine so I know that's not it.
Also, it sounds like you have more things going on with bone pain. Maybe that is a mag thing.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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glm1111
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Greta,
Since you posted about the very strong antiparasitic tincture you started and the reaction(s) you are getting including the bells palsy, it sounds like a herx.
You also stated you are doing salt/c which is quite a combo with the tincture. You may want to take a break from the tincture and salt/c and turmeric until this calms down.
If you can get a colonic and or do an enema, this would be very helpful since your pain seems to be centered on your bottom.
Dead and dying parasites in the lower colon. Parasites can cause a lot of pain.
Hope you get some relief.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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GretaM
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Argh.
It is back. 17 days since last time
I am in agony. Feels like my bones are exploding from the inside out.
I sure hope mepron helps this pain.
Sitting laying down standing walking massage. Nothing helps these bones.
They throb feel broken. Awful.
I'm trying extra boron.
Prayers
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Yes, I had that too felt like bones were braking from inside out.
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lpkayak
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Greta-has it been xrayed? I had a fractured pelvis once that did not get xrayed for 3 months until i asked doc how he was sure i didnt have bone cancer
I was miserable-very disabled by it-and blamed it on lyme but it wasnt
Those donuts must be cheap on amazon...or doc should order one
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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GretaM
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Hi LP, No, not xrayed. That is a good idea. I know one of my hips/leg bones does not rotate correctly. Something about impingement.
Maybe an xray will show what is going on.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lpkayak
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A second hip fracture wasnt found til a bonescan was ordered bymy knee doc
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Greata.. I am going through the same thing you are and will write once I've resolved this possible TB thing (see my recent post). I GET IT - my pain is exactly like yours, and it has been SHEER AGONY. Hang in there and will write soon! gentle hugs!
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randibear
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piriformis syndrome maybe? I have thisin my left hip. man it hurts. some days I can barely walk. feels like the bones are rubbing against each other.
I have deep low back pain. my doc said I havebulging discs throughout lower back but said it maybe this piriformis syndrome which I gathered is basically severe muscle strain.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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GretaM
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Thanks Randi, tailfeathers and LP.
All suggestions much appreciated. Am seeing the doc tomorrow...
Hope like heck something can be done for this. Feels like bones are broken from my heels to my hips.Hips are the worst-any weight bearing or moving my legs feels like none of the bones or muscles are in sync...
Grrr.
Sorry you guys go through this also! Wouldn't wish this kind of broken bone pain on anyone. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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LisaK
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Poor Greta, so sorry you are going through this. I have had this pain and it is terrible.
It went away for a while for me with treatment, but this past month has come back in my legs and arms.
I cant remember what exactly helped me before, but maybe a combo of vt. D and mag plus treatment?
I hope you find answers and relief ASAP!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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GretaM
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Thanks Lisa for your kind words.
Last night it was the worst it has ever been. I got two hours of sleep. The pain just kept me awake until the early morning. But then had to wake up at 4am for work...feel run-over today.
I sprayed my entire body with magnesium oil to try and get some magnesium into my cells.
It did not help, just made the sheets stick to me. haha.
Saw a sports doc today and he says my hip is impinged, and I should get an xray.
I worry the joint is ruined from lyme now. One side is worse. argh.
If anyone had some suggestions for help with this pain, I would surely appreciate it. Am on LDN so can't take opiates.
Vitamin D is a start, I will take some tonight.
It feels like the pain is right inside the marrow.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lpkayak
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Fish oil, curcumin, skelaxin, neurontin
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TNT
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So sorry Greta, this sounds unreal...the kind of pain! I hope you can figure this out, what is causing it, and how to help with the pain.
I have been having bone crushing pain ever since I reacted to the flagyl 2 years ago. It was mostly in my hips, lower lumbar, and upper outer thighs. My SI joint is really affected, and I can't walk properly lately. With all the coordination issues along with it all, I look and feel like a PD sufferer.
Have you looked into the possibility of brucellosis? I am getting tested soon and hope we can get a clear diagnosis as I am certain this is some of my problems... chronic neuro-brucellosis. Everything! fits the picture. In fact I thought that 2 years ago when I got antibodies tested and they were negative. But, of course my CD57 count was under 20, so that may have affected the results.
Brucellosis actually eats away at the bones like the vertebrae, si joint, hips, but its special fondness is the SI joint and groin area.
Google brucella and SI joint and lower back pain. Some sites will show radiological pictures of the damage done to these areas, including the hips.
This is a nasty cousin to bartonella that is easier to get in some ways than bartonella.
Hope you can find relief. goodnight TNT
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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posted
I've had the same pain as GretaM for months - keeping me awake and hurts all day - this is the worst part of it all sometimes !!!
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randibear
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jus don't let them give you steroids
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GretaM
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TNT-so sorry flagyl tipped over the barrel for you and the bone pain started.
Two years! Ouch ouch ouch. Poor you! I sure hope you find the cause for it.
I had a bad flare of bone pain last night. Real real bad. Then got the runs. (not sure from pain or other infection). Got blood done today, and had a few out of range parameters.
Glad I went in for bloodwork when the pain was so bad-and that the bloodwork actually reflected how I was feeling.
Have you had any abnormal blood counts associated with this bone pain?
Piroformis-ouch! That looks painful too! What a weird place for a little muscle-right next to the sciatic nerve. Ready to pinch it at any time haha. Randi and lymetoo-did they offer steroids for it?
I am seeing a sports doc now to keep me walking. I go once a week now and he manipulates the muscles in my legs so I can walk better.been two times, seems to help me not look like I am teetering when I walk.
The low wbc, low lymphocytes, and high rbc scare me because of the leg bone pain I have. Now I am worried about marrow.
Probably just being silly but never had that many abnormals before on a blood test.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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surprise
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I dunno, maybe you got the Lyme and Bart beaten down to dead, and Babesia is yelling don't forget me.
I'm not a babs expert (or any other) but doesn't this blood work have red flags for it? The pain location/ sound does...
Have any cryptoleptis left? Malarone script? I'm sorry Greta- sounds awful :-(. Hang in there---
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