posted
I am fairly new to this site and have been ill for about a year and a half.
It seems that with many who have Lyme Disease symptoms have varied over time.
The one constant that has certainly become chronic pain for me is my buttock and leg region.
There was a two month period where I could only sit on a "donut pillow" and ice packs because of the pain.
I am wondering if anyone else has encountered this type of symptom?
My butt and legs feel like I just finished a 10 mile run (constantly). The muscles in my butt are sore to touch even.
Does anyone else have these types of symptoms?
Thanks for reading.
Posts: 9 | From Vancouver, Canada | Registered: Oct 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Thats so weird you posted this. I was just thinking yesterday how i never hear of people talking about this sort of pain.
For me it is sharp shooting pains through the hips downward through the butt and into the thighs.
So in fattiest parts? Not sure if that has anything to do with it. For me because it is sharp and shooting as well as aching I have thought it was due to the Nerves. Also maybe related to the viral or the neurotoxins.
I get this worse during flares and herxes.. and also oddly enough. When other symptoms are doing better. When i feel treatment for lyme is working. Then i get these symptoms.?
The other reason I think it is viral as Valtrex helps stop the pain. It was a guess on my part and my doctor agreed to prescribe the drug. And it works. After over a year it is not working as well so I may need more dosing? But..Just a hint.
This may or may not be the same as your experiencing.. But could be.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
I have this pain. It was one of my first symptoms. I still have it. I often have looked for others that have this same issue.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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massman
Unregistered
posted
Previous accidents / injuries to the areas involved ? Any time ?
Arthritis in the areas ? Arthritis anywhere else in the body ?
How much time on average sitting ? Standing ?
Tenderness in specific muscles or joints ?
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I have similar symptoms. For me it is the piriformis muscles..and upper hamstring muscles.
Physical therapy using mycofacial massage has helped me a lot, but I still get tightness and pain if I sit or stand too long.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Periformus and groin muscles, for me. I do some Yoga stretches every day and it usually keeps it in check.
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Call,
Yes I get this...it used to be in my butt quite often, but lately it's mostly my quads, sometimes my calves and often my feet. It feels like sore muscles, like I have run a marathon the day before and every muscle strand is incredibly sore. Mine usually lasts 2 days and then is fine the third day.
I started getting it weekly when I upped treatment times (I'm doing alternative stuff right now). Yesterday I SHOULD have had the sore legs/feet because it is cyclic for me, and I didn't get it! I don't know what that means, but I sure was glad and surprised!!
I'm so sorry that you get this...it's so hard because it hurts to move and to touch. I know sometimes for me, just sleeping is hard because if I move my legs just to turn over at night, it is pretty painful and wakes me up.
posted
I do two things for this - first, see a chiropractor who knows how to do decent lower back/pelvic adjusting.
And second, I stretched all tight painful pelvic/leg muscles out in the pool over nine months time, once a week, with a torso float around me and snorkle and mask so I didn't have to turn my head. I also used a kickboard for any needed support.
I did the latter since I had flunked pt! This was two years before I found out I had Lyme. It was sorta like necessity is the mother of invention kind of thing, and it worked.
In the pool, since our weight is supported by the water, we can find any stretch to do, including doing a lot of them off the side of the pool, like doing the splits in as many angles as you can find to do them. I think there's something like 35 muscles attaching into the pelvic region.
It was painful and slow work, and gradual in progress. The game plan was to find any muscles that hurt and gently stretch them till they hurt a little less. Felt like I was working from the outside in, like unraveling a tangled ball of yarn.
I believe I was allowing blood circulation to happen again, with nutrients in/waste products out.
In between stretches, I swam whatever gentle laps I could do, with support aids.
Because of this work, the pain is mostly gone. I now do weekly maintenance swimming/stretching.
So can you handle being in the pool?
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Now I am really disappointed!
I replied to this post about a butt hurting... and trust me, it was HARD to do....
But, I did NOT, I repeat did NOT say anything out of line!
I was well-behaved throughout my reply.
And for all my troubles... low and behold... here comes callctr back here to respond.. and look at this...
Callctr said...
"There is not a day where my butt is not sore. My legs are on and off...but I have a constant pain in the A#*!!!"
Humpft...
Here I am being the perfect Tincup and acting all adult-like...
And callcrt is acting up and doing funnies about her own butt!
posted
i have had the very same thing on and off for 18 months....my hips, butt, front of thighs been to physical therapy etc....so much so that after one session i could not sit down...and when i went back i told then not to touch me it hurt so much..so i lay there with ice on my butt and paid for it but nothing helped it just went away....no one could really tell me why.....diagnosed with lyme last week...now i'm wondering if this is why........weird.......
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
I used to have this problem early on when my symptoms were starting to progress. Along with the muscular pain, I had the worst sensitive skin where I could not have anything touch it.
That comes and goes now and is not a prominent but I think with time and treatment, mine went away slowly.
Posts: 261 | From NW Pa ~ Crawford County | Registered: Oct 2007
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Gosh Since this post started.. my butt just bothering me to death.
I still think it is viral. It is like shooting pains and aching that is from nerve pain. It can be hard to tell..
But .. an idea
Increase or take L Lysine up to 3 grams a day.
I have started back on that high dose and also I take valtrex.
So it is helping.
When I go to physical therapy or anything like that it makes it so much worse. It feels like the moving around and the loosing of the muscles relases more toxins or infection and i get really sick as well like a herx reaction.
I have not been able to do PT for that reason for years. Esp in the low back area and around the hips and butt.. and thighs.. The torso area.
I think that is where this disease hangs out . .in the fatty areas..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
I had the same thing, plus pain in my upper extremities as well. I found out the problems in my hips, buttocks, hamstrings, quads, and calves were coming from trigger points in the gluteous minimus and gluteous medius muscles.
I'll bet you have several spots of exquisite tenderness around your waist just below the belt-line and into the buttocks area.
To find those tender spots, or trigger points, take a tennis ball, put it between you and a wall, lean into it, and use it to "iron" all around that area. The first time I did this I found some spots that were unbelievably painful!
Before you go any further, get a copy of the Trigger Point Therapy Workbook so you can make sure you are doing the self-massage correctly.
I know I am probably sounding like a broken record based on my recent posts, but I think everybody with musculoskeletal pain should have a copy of that Workbook. It has worked wonders for me and is very simple (and inexpensive) to use. And, no, I do not have any financial interest in the book or the publisher!
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Jason. I was in PT for trigger point therapy that the PTs were trained to do and it was so horrible for me. I tried to push through it. I did.
Ugh.. Like i said. it felt like it released so many toxins. Maybe I was just so overloaded at the time with toxins that is what happened and i should revisit it.
Thanks for the book suggestion and ideas.. Will take a look at the book....
Thanks again.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
trigger point therapy is very very rough...when i first went two years ago...i was in so much agony...my PT recently told me that back then she couldnt even touch me I was THAT bad.
Now two years later I handle it so much better...sometimes I will flare after PT but it is rare.
What makes me worse is stretching...she cant stretch me too much or I am a complete mess.
My hip flexors have a lot of trigger points...as does my upper hamstring and piriformis muscles. Bascially everything below the waist is full of TP's
It is really amazing where these TP's refer pain.
Springshowers- there may be a time in treatment you can revisit PT like i have and have better results.
Also intersting you feel it is viral...I want to try Valtrex again and see if I have any relief.
edited to add- springshowers- your PT also might have been applying too much pressure to the muscles.
The one PT I see said to me you are just more sensitive , so I have to press lighter with you , but we get the same results...If i pressed harder you wouldnt be able to function after PT.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Hi There.> You may be right. I might be able to revisit it.
Oh One thing I know. It was not too hard or too much pressure. These people were some special newly trained by the Best FMS doctor to do GENTLE GENTLE work as a new method. They were barely doing anything and that is why they were shocked i responded to drastically to it.
Ii also went to a PT for my back who literally barely did anything at all. Just a little modality of movement.
II now do a lot of back stretching and keeping it loose.. as well as I have the Back to Life machine and use LED light on my back. I have come a long way. But I am not quite ready for the professionals to get another jab at me.
I had one Chiro who did flex and distraction method who was ever so gentle and I could handle that one time a week maybe.. he left his practice and I never found another like him. I tried.. many and gave up now.
I do think it is partly viral.. The pains in the fatty areas and the muscle etc. I also feel it is infection related in the bones.. meaning the spine.
So when I get an back adjustment or any kind of modality that moves the bones around and the cartalidge inbetween the bones that you get a infection or toxin release.
For me anyway...
I think I have been harboring a lot of toxins..
I have been doing Cold laser Treatments to my Lymph areas. The first three or four weeks.. One time a week.. I was about to die for the next 5 days... I about quit and my doctor prompted me to keep going.
So I did.. And now I can get through them with only a day of herx reaction afterward.
This stuff hides everywhere ya know?
And they live on the ends and along our nerves. I can feel them.. buggers .. and when i treat I can feel the die off happening and nuerotoxins..
its painful..
One day.. when I can to to a PT> I know I have come A LONG way.. Getting there.!
Glad you can do it. Thats a great sign..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
I've got similar issues with my leg as well. Been going to therapy for the past month with mixed results.
At the end of the therapy they use ultrasound therapy on my leg but I wonder sometimes if it actually aggravates my leg more than it helps.
Last week they let an intern do the ultrasound on me. He applied way too much pressure and didn't seem to do the procedure correctly. Two hours later my leg was in terrible pain.
I went back to the therapist and told him what happened. They gave me an ice pack to put around my leg for the weekend.
They made excuses for the intern but I told them I will not permit the intern to do ultrasound therapy on me again because the extreme pain I experienced afterwards.
Anyone else here have ultrasound therapy? What were your results?
posted
Ultrasound always takes down pain for me, temporarily.
In my post above, I think it could have helped me not to know I was dealing with anything real at the time!
All I knew was that my muscles were really tight, so tight that the pt gave up on me 'cause I couldn't handle anything at all in terms of pt exercises.
I simply got in the pool and ordered my body to start learning how to stretch! I remember that first time - I wasn't taking no for an answer - you, muscles, are going to start moving, even if it's a centimeter!
Yes, it was painful when I started stretching in the pool - I took some pain med to start. But I noticed that I could do more with any muscle after stretching it, even in that session, so I went for that incremental difference, irregardless of the pain.
I was going for stretch difference, not pain difference, and it worked. 'Cause then the pain lessened week by week. I'd say in a month's time, I knew it was going to work, slowly.
I can handle chlorine, so I can handle the pool. For those who can, this method can be a way out of the tight muscles.
And I had four years of myofascial trigger point therapy from one of the best MFTP therapists in the country, and that did not stop the trigger points.
I guess what I feel is all these other treatment attempts are palliative if we're not getting circulation back in these tissues. They are starved for nutrients and waste products aren't getting out.
This work was accumulative; the progressive improvement was exciting to me, week by week. I did it once a week. I don't know how much quicker the change would happen if the pool stretchwork was to be done more often. Probably quicker.
And I made it, in nine months time. My pelvic muscle pain dropped from a ten to a two, I'd say. With maintenance pool stretching and swimming, I have kept all progress, for five years now.
Posts: 13116 | From San Francisco | Registered: May 2006
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Robin, do you think that the ultrasound helped you overall?
By the way, when we travel, which isn't much anymore due to my leg pain and lyme, we would always stay at a hotel with a pool.
I loved being in the pool because I could do so many exercises in the pool that are difficult for me to do outside the pool.
Every time we'd go to a hotel and use their pool for the weekend I always felt so much better for a few days.
Our University Medical Center has a pool, hot tub and sauna and since I'm a patient there I am able to use it.
Unfortunately, I've been to sick too sick to use it yet but do look forward to using it as I know it will do me a world of good.
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I have to say again I think Ultrasound and Cold Laser and LED and all those therapies can affect our infections not just them muscles.
I have a bad reaction to ultra sound too. My therapist said it is impossible for me to have reacted that way and that they used the lowest and gentles setting and it was like dong nothing almost.
Hmm well.. it happened each time. How do you explain that? Well its just a guess but I continue to relate it to the infection that gets affected and somehow moves around or dies off or whatever.
LIke touching a bee hive.
ANyway. I have my own pool that is Heated and has a salt system on it. I have not been able to swim this year.. yet..
But .. prior to 2008 when I relapsed I had two years where I was working up to swimming daily.. I am working on getting back there.
IF you float. YOu feel NO pain. Its heaven..
Good for you Robin. I am planning on making that move soon. >Even though the pool is heated in the winter it tough to get in and out of when its so cold .. ANd breathing the cold air even when my body is in the warmer water.. its not easy.
So I may wait til the spring again. but I agree.
THE POOL is amazing and the perfect thing for people like us..
GWB Hope you can get into a pool again soon too..
It really is the way to go when you talk about exercise.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Gary, I always feel better from ultrasound. But through my years of lots of pt, neither it nor anything else that was tried ever got me to where I got with the stretch/swim effort.
And the point I need to stress here - I had to work through the initial pain to get somewhere. It really hurt to stretch those tight muscles initially. As I mentioned, I took some pain meds in the beginning. I was going for improved function, and I saw that I could start to get that, even the first time.
THEN the pain relief started, I'd say by the end of the month, and that was exciting! I always think it's cool when we can figure anything out for us!
Posts: 13116 | From San Francisco | Registered: May 2006
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