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.

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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.

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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 ?

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:

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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.

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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.

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

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.

Hit "enter" twice every few sentences.

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oops!
Lymetutu

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.

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

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?

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.

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.

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.

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.

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!

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!

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.