LymeNet Flash: pain

This is topic pain in forum Medical Questions at LymeNet Flash.

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Posted by missbef05 (Member # 7327) on :

does anyone know how to manage the pain caused by lyme? can hardly walk 10 feet without sitting down

Posted by Cher44 (Member # 7243) on :

I have the same question. Since starting antibiotics 5 weeks ago.....well 3 weeks in I started with really bad shoulder pain. Some days it really put me near the edge!
Cher

Posted by Aniek (Member # 5374) on :

It depends on what type of pain you have. Pain treatment needs to be targeted. Nerve pain is treated differently from muscle pain, etc.

Can you describe the pain?

What parts of your body hurt?

Does it feel like your muscle, your bone, your skin, inside the joint, something you can't actually put a word to?

What type of pain is it? Is it burning? stabbing? acheing?

Are your joints swollen? If so, are they red or hot?

Are your muscles tight?

Any other descriptions?

Get as specific as possible. This is a good exercise, because you are going to want to bring a detailed description to a doctor to get pain treatment.

If you can find a good pain specialist, I believe that is the route to go. But, there are lots of bad pain specialists.

There are also pain specialists who are great at treating the pain, but will lecture you on why they think you don't have Lyme. It may be worth swallowing your pride for the visits and getting the good pain treatment. That's what I did, until I got pain unde control.

Posted by Lymetoo (Member # 743) on :

missbef....I just read your other post. The best thing for your pain is to get further treatment with abx. In the meantime, maybe your dr will prescribe some vicodin or something. I've been there.

------------------
oops!
Lymetutu

Posted by sapphire (Member # 4599) on :

pain is difficulkt especially when first staring treatment . there are many herbal antiinflammatories or pain treatments , theres massage and acupuncture besides regular madicines

Posted by sapphire (Member # 4599) on :

as an addendum, boswellia and turmeric are two helpful herbs, extreme pain might be helped with valerian root( use caution)
sometimes taking some benadryll helps cope with the pain too

Posted by ivebinlymed2 (Member # 7330) on :

Missbef05 and others...Wondering what's lyme pain like? My ten year old daughter is the sufferer here. Shooting/sharp pain she says. Is this accurate for lyme pain? She has constant bone/muscle pain and a myriad of other lyme symptoms, which seem to be tolerated and then suddenly excruciating pain at times. Sometimes intolerable pain lasts an hour or more, she screams/cries. We feel so bad for her and try to make her as comfortable as we can. She doesn't want to be touched, says it hurts worse. Most of the time the flares of extreme pain criple her. Can anyone tell me anyting we can do? We use advil, sometimes Lortab (prescription), sometimes a warm bath works (when she can move enough to get in). We are awaiting a diagnosis from a Lyme doctor in one week. I am praying they do clinical findings/symptom based diagnosis. She needs relief. Brothers age 4 & 8 suffering emotionally just watching her, too. It's sad. He dad & I wish it could be us instead! Regular docs say she has a pain disorder not lyme. They say if she has lyme, she still has a pain disorder that lyme patients don't have pain this bad. They want me to take her to our best state hospital to a pain spec. to help her. I have heard the opposite of docs, that late lyme pain is excrutiating sometimes. Aniek you think pain spec may be in order here? Anyone else? Thanks for any help.

Posted by ibrakeforticks (Member # 6785) on :

I just started taking cholestyramine, and it reduces my leg pain when taking walks. If your pain is due to accumulation of neurotoxins (Dr. S says Lyme bacteria produce neurotoxins), you might try this.
www.chronicneurotoxins.com www.hopkintondrug.com (pharmacy that compounds cholestyramine)

ivebeenlymed2, what "pain disorder" are they saying your daughter has?

Posted by NP40 (Member # 6711) on :

quote:
Originally posted by ivebinlymed2:
Missbef05 and others...Wondering what's lyme pain like? My ten year old daughter is the sufferer here. Shooting/sharp pain she says. Is this accurate for lyme pain? She has constant bone/muscle pain and a myriad of other lyme symptoms, which seem to be tolerated and then suddenly excruciating pain at times. Sometimes intolerable pain lasts an hour or more, she screams/cries. We feel so bad for her and try to make her as comfortable as we can. She doesn't want to be touched, says it hurts worse. Most of the time the flares of extreme pain criple her. Can anyone tell me anyting we can do? We use advil, sometimes Lortab (prescription), sometimes a warm bath works (when she can move enough to get in). We are awaiting a diagnosis from a Lyme doctor in one week. I am praying they do clinical findings/symptom based diagnosis. She needs relief. Brothers age 4 & 8 suffering emotionally just watching her, too. It's sad. He dad & I wish it could be us instead! Regular docs say she has a pain disorder not lyme. They say if she has lyme, she still has a pain disorder that lyme patients don't have pain this bad. They want me to take her to our best state hospital to a pain spec. to help her. I have heard the opposite of docs, that late lyme pain is excrutiating sometimes. Aniek you think pain spec may be in order here? Anyone else? Thanks for any help.

Pain disorder, my a$& ! Walk, no run, away from these bozo's.

My son has lyme and he's definitely better. However, earlier in this disease he had horrific pain. Said he could feel it in his bones, then sharp stabbing pains that moved around in his chest,neck, arms, legs, etc.

It was so severe he couldn't sleep, and needed to be medicated. Morphine barely made a dent in his pain. He used fentanyl patches 50mg, and a host of other strong narcotics, and his pain was still extraordinary. He went through hell for months, and pain meds offered little relief.

We hospitalized him in a facility near our LLMD for 3 days, so they could try various things to relieve his pain. Your daughter needs a lyme literate doctor, NOW !

Pain disorder ? Where do these "ducks" come up with this stuff. There's loads of people on this board that will tell you that lyme is the most painful thing you can ever imagine, and I witnessed it first hand. There's a great lyme clinic right by you, are you taking her there ?

Posted by tequeslady (Member # 6832) on :

"Regular" doctors don't know anything about Lyme, that's why they probably say that.

I went through several years of the worst pain I have ever felt in my life. I remember counting the seconds to get through the night. It was absolutely horrible.

What helped me? I'm not well yet, but about 70% better. Doing what my LLMD has told me to do during the nine months that I have been seeing him. Also, a lot of manual therapy to realign my contorted body.

quote:
Originally posted by ivebinlymed2:
Regular docs say she has a pain disorder not lyme. They say if she has lyme, she still has a pain disorder that lyme patients don't have pain this bad.

Posted by ivebinlymed2 (Member # 7330) on :

NP40 just as I thought too, the pain is extreme with lyme. I had already heard this, but the docs were telling me otherwise. I enjoyed asking the docs if they had actually asked someone in the late stages of lyme what their pain was like. They were silent! Speechless! I have watched my daughter writhe in pain and become this other person. She is so mad at her disease that she is displacing her anger on us. Then she calms down after and is sorry. It is like the worst childbirth labor - you know when a mother giving birth smacks the husband whom she loves in the face and threatens him, only to later tell the husband how much she loves him. I see out of your mind kind of pain in my daughter. Even my own mother doesn't understand. I made a comment about Lindsey's pain two nights ago and she said see she can control her reaction to pain. I said no mother you are way off base. Don't get me wrong my mother is very supportive, but even your closest relatives cannot seem to fully understand what you are going through. I am taking her to the doc you're speaking of (NP40) I think, located north of Charlotte, in Huntersville. (Am I giving too much info? This is my first time on the board.) We are seeing his nurse practitioner. I can already tell from talking to her that she is compassionate and very intelligent on the subject of lyme. Next Monday cannot get here fast enough!Thanks for the feedback NP40 and Tequeslady. This is both helpful and encouraging. My username if you notice is I've been Lymed (lied) to and yes I have been lied to by many docs. They just didn't know they were lying. I guess you can't lie about what you don't know about!

Posted by Aniek (Member # 5374) on :

ivebinlymed2,

Lyme can cause all different kinds of pain. It's very possible that the Lyme triggered an immune response that is causing the pain. Doctors still know very little about pain.

I did have doctors give a number of reasons why my pain was not Lyme pain. But my pain has decreased with treatment.

The best advice I can give is to not give up until you get pain treatment for your daughter. The other day I just started to cry because I remembered that I could never get the pain to stop when I was in high school. As much as I had doctors try to find an answer, none ever prescribed me anything for the pain.

Have you worked with a pain specialist? Even if a pain specialist calls it fibromyalgia, or another name, it might help to atleast treat the symptoms while you are looking for answers and treating Lyme.

Many people find pain relief from antidepressants, because they re-balance the neurotransmitters. So if a doctor recommends that, he's not saying your daughter is depressed or that it's all in her head. Some people benefit from Neurontin for nerve pain, which it sounds like your daughter's pain may be. If it's muscular, there are muscle relaxers that work best when taking every day.

Posted by ivebinlymed2 (Member # 7330) on :

I called back to the ped. rheumy office to get the no. of the pain specs. he recommends. There will be 5 docs (all specs., gastro, neuro, psych, etc.) that try to find the source of pain and then they know how to treat it. For instance, the stomach or head may be the pain origin. Once pinpointed, they treat the pain appropriately with meds, psych therapy (possibly) and teaching coping skills to the patient (I would like to know what that might be!). Wouldn't it be interesting if they came up with neurological origins! Anyway, it may be worthwhile, even if I think the cause of her pain is lyme. My fear was she would be diagnosed with a pain disorder and we'd never get to the real cause. Aniek, you have made me look at this differently. The medication they prescribe would probably not interfere with anything the Lyme doc would do (I will double check). I could make an appt. with pain docs for her now (it may take a while to get an appt.). By then we should know more about lyme diagnosis. Thanks for your help.

Ibrakeforticks - You asked - what "pain disorder" are they saying your daughter has?

They haven't said what pain disorder yet. The ped rheumy said his theory is my daughter had a viral illness that caused sinovitis and once the viral illness was gone it left behind a pain syndrome.

Posted by breathwork (Member # 567) on :

A good deal of lyme pain is neurological in origin, not all, but a good deal of the worst pain. BB has an affinity for nerves and myelin that covers nerves. It loves any part of the body with less blood flow than another...meaning nerves, joints, etc....

I would see Dr. J frist to see what he and his nurse practitoner say about the pain...I would see whichever pain specialist that his office recommends rather than a team specialist approach. If the team can't find what consider to be an acceptable origin, they will say it's all in her head, send her to behavioral therapy and leave her in agony...and that will be in her medical records for life.
See Dr. J first.

I am a trauma nurse and a therapist. If they can't find what fits into their constelllation or world view, it will all be her fault...she doesn't need that now. Find out what Dr. J says about this group first.

I and my children all have lyme. The pain is nothing like anything I have ever experienced...Childbirth is a cake walk in comparison...root canals are easy...a broken ankle is easy...lyme pain is insidious and ever changing and hard to treat in traditional arenas. See the doc who knows lyme to treat lyme pain, in my opinion

Posted by Lymetoo (Member # 743) on :

Could you guys please keep your paragraphs short so we vision-impaired Lymies can read them? Thanks!

Hit "enter" twice every few sentences.

------------------
oops!
Lymetutu

[This message has been edited by Lymetoo (edited 17 May 2005).]

Posted by ivebinlymed2 (Member # 7330) on :

Sorry, Lymedtoo. My daughter is the lyme sufferer in my family. I will be more sensitive to the needs of readers.

Breathwork, good point about docs thinking it is all in her head.

Her gastro doc already tried that theory out on us early on. That was before bone marrow tests, mounds more of blood work etc.

He said she came in all slumped and then smiled over something that was said while we were there. He said the smile indicated to him it was all in her head!

She was seeing him for her recurring nausea and g.e.r.d..

Yikes! It was all I could do to hold myself back that day. He also forgot to do her blood work while she was under for the endoscopy. (She hated needles by then.)

His incompetence made me angry! My daughter was so hurt by the suggestion that it was all in her head.

She looked at me straight in the eyes and crying said "Mommy I am not making all of this up."

I told her I agreed with her, but she still felt so betrayed by her gastro's remarks.

Well we have just five days to go until the LLD. She does have pain med that is taking the edge off.

LLD doc maybe knows next step to treatment of pain.

Thanks it is helpful to know from those who have been there!

Posted by breathwork (Member # 567) on :

My sister in law lives in Durham and went to a pain group at Duke before seeing Dr. J....It was a horrible experience for her...a lot like what your daughter and you experienced...Both of you deserve better...

First do no harm? Some doctors need to remember this daily..

You're a good momma!

Posted by ivebinlymed2 (Member # 7330) on :

Thanks for the compliment Breathwork.

That is the facility we were told to go to for pain spec. Thanks for your help in heading this off at the pass.

How is your sister in law, now? Better I hope. Was her pain caused from Lyme, too?

Any specifics on what they diagnosed her with?

Posted by ibrakeforticks (Member # 6785) on :

ivebinlymed2,

I wouldn't worry about what lame doctors put in your daughter's records, but I would suggest getting copies of everything. If a report is inaccurate or insensitive, I think you have the right to request corrections be made. That way errors won't follow her "for life."

To say all the pain is from Lyme may be simplistic at this point. It seems to me (and I may be wrong) that there is pain caused directly by the Lyme infection (or neurotxoins from the infection), and then there are cases where the Lyme infection doesn't directly cause the pain, but it screws up the immune system, and then auto-immune attacks take place on nerves/joints/whatever which cause different pain.

The doc who said he thought there was a viral illness that left a pain disorder may be onto something. Maybe because of the Lyme, the immune system couldn't take care of the virus properly, and now there are other sources of inflammation/pain.

But if your daughter's pain is caused directly from the neurotoxins created by Lyme, you might try cholestyramine (www.chronicneurotoxins.com) and see if that helps her symptoms. I just started this myself and I think it helps some of my pain symptoms (I'm not on abx, so the pain reduction is not from killing the bugs). I think some people have more trouble getting rid of toxins than others.

I ask what pain disorder are they calling it because at some point someone has to make a diagnosis, right? They may call it Fibromyalgia, RSD, Central Pain Syndrome, which may seem like useless allopathic labels, but the nature of the disorder should direct the course of treatment. And yes, maybe these are all meaningless and the original problem is the Lyme, but other pain problems may have developed and may have to be treated.

Thank you for sharing your daughter's situation; I'm trying to learn from everyone and better help myself through this minefield also.

Posted by ivebinlymed2 (Member # 7330) on :

Thanks, Ibrakeforticks. I really have not thought of the pain in that way.

I forgot to mention that the ped rheumy thinks he has found some fluid in her right ankle on Xray. I've read of other peds patients having this symptom in their joints.

Anyway, as I mentioned in an earlier post she has a bone scan and an MRI scheduled for mid June. I am hoping to get partial resolution Monday at the LLD.

Maybe she won't have to go through with the MRI and bone scan. These both seem invasive when you are tired of being poked on and you have a fear of needles.

At least they said they would put her under for both procedures. Coming out of anesthesia is painful (if there have been needles used or biopsies take) and volatile for her.

Thanks for your replies.

Posted by groovy2 (Member # 6304) on :

Hi Missb
I have found Gluecosmine sulfate to
help alot for joint - tendon and some
muscle pain.I have used it for about
15 years.It used to be expensive but
now it is cheap. Take 1500 to 2000 mg
a day- It is made from shell fish
shells- so there is a chance of
alergic reaction in some people.
Made a Huge diffrence for me.
Dont buy at walmart--get at health
food store.--Jay--

Posted by NP40 (Member # 6711) on :

Lot's of folks drink Mangosteen juice for pain. Some on here swear by it. Hot baths in epsom salts, or squeezing fresh lemons into a glass and sipping.

Ivebinlymed, I'm not so sure I'd schedule a multitude of tests, and trips to different doctor's for your daughter. Your LLMD will have seen hundreds of cases like your daughters, and can probably make some strong recommendations for any further testing.

Might be best to check with them first. I know how it is, you're desperate to help your child, and you'll go to the ends of the earth to help them. I did the same, and in my case our LLMD had a handle on it, but it did take a while for us to trust his expertise.

He has periodic testing done for a whole host of things, and has had MRI's, ECHO's, etc. I'm sure your LLMD will require testing at some point as well.

Posted by breathwork (Member # 567) on :

My sister in law is doing very well these days. She had lyme and ehrlichia..She saw Dr. J for about a year and is doing great now...off meds...lost 40 pounds....I envy her.

Her best friend has since been diagnosed with lyme and babesia and is seeing Dr. J. She's having a rougher go of it than my sister in law.

As to the Duke pain group, the first thing they did was to send her ten pages of questionaires that are used for psych evaluations (I'm a nurse and a therapist). Clearly their approach is to assume psych problems first and organic origins of pain second.

Breathe deeply now...love and enjoy your child and yourself.... and know that you are seeing one of the good LLMD groups. They are few and far between, so you're starting off in the best place possible right now.

And, yep, you seem like a darn good mamma to me!

Posted by ivebinlymed2 (Member # 7330) on :

NP40, my daughter's ped was the one insisting the tests are warranted. I said so if you get confirmation that there is fluid in her ankle, then what?

He said there could be disease in the bones that we need to find.

Now, how can that be when a leading Hematologist at our local hospital said she the bone marrow test showed no infection in the bones!?

I guess I fell prey to scare tactics for more testing, huh? I did tell the sceduler for the MRI & bone scan I hope to call back and cancel later if her case is on the road to resolution before then.

I have heard of Mangosteen. I have a friend that is trying it. I will call her.

Breathwork, great to hear someone emerged from the illness better off than when they started. That is encouraging!

Posted by lifewithlyme (Member # 4557) on :

acupuncture works for me...enables me to stop taking pain meds all together..

Posted by ivebinlymed2 (Member # 7330) on :

Missbef05, getting any relief yet for your pain? Have you had a chance to try any of the things mentioned?

Just thought I would drop by to say sorry. I didn't mean to hog your topic the other day. I hope you are feeling better! My daughter has trouble walking some days,too.

Do your mobility problems stay or do they wax and wane like my daughter's? Some days are better than others. Sometimes I have to carry her places. She hates this!

That is not easy. She is a tall ten year old that weighs nearly 80 lbs.! Not that I can't use the upper body workout, but there has to be an answer to the agonizing pain!

I am going to ask the doc on Monday which steps to take. Your posting helped us find lots of good suggestions. I sure hope this message finds you having a better day.

Posted by Lymetoo (Member # 743) on :

Be sure to buy XANGO mangosteen product, not some other useless brand.

Posted by burnbitter (Member # 7088) on :

Two things seem to make pain tolerable for me. Painkillers are right out as they all make me vomit.
Xanax helps greatly with the nerve related pain. It's good for the weird tingly everything feels too much. When touch feels like you've just skidded across gravel.

Second, I started taking Adderal XR to make me awake so I will sleep. While it's working, it seems to decrease my sensitivity to pain. Not sure why, but it seems to. Downside is that once it wears off it tends to make things hurt more, muscle cramping and tension. I can't wait to not have to take it anymore. For now though it makes me functional.
But it does help me sleep at night which helps me heal.

Also, as my treatment progresses, everything is slowly hurting less.

[This message has been edited by burnbitter (edited 21 May 2005).]