What do people do for pain?

So Gkamom your old dr. has Lyme too? ! (Joke ) .For pain which was much worse but now probably bareable I take Amiltriptiline 25 mg at night (it also helps me sleep and is antidepressant) and rarely paracetamol. You cou take Gabapentin or Lyrica. The idea is that we have neuropatic pain and you should stop the CNS irritation to retrain your NS. This is why they gave it to me, I mean the physiotherapy dr. What helps with pain în the joints is HBOT. It can actually cure artroborelliosis. It is no joke, my first LLMD is specialised în that. And I took tramadol, it helps but it makes me depressive, I do not take it anymore. Also starting pilates helped meu first time around, but I am not în the shape to do it now. On a scale to 10 my pain is dayly a 3-4 so not bad.

lyme treatment was what eased my pain, but I don't have fibro.

My niece has fibro and she takes a script of something from her doctor but it is not a narcotic. She just had a baby, is single and working full time. It is probably Lyrica. She did a lot of physical therapy for hers too. She goes for walks a lot even when she is flaring. She says she just pushes through it. Sometimes I can't hug her because she says it hurts too much. She has such a good attitude. I think she goes to a support group also.

I'd like to address everyone individually but I don't think it is practical. So here goes.

First, my old doctor is not the one with Lyme. That's the Lyme doctor. Weird huh. My old doctor was my Rheumatologist. Unfortunately, he has been diagnosed with "a medical condition that prevents him from seeing patients." I suspect that it's early onset Alzheimers based on the personality changes and increased forgetfulness I have seen in the last two years. I read a review by someone who said "he looked through me like he didn't know who I was." Unfortunately, he also left my records a mess which could effect my SSDI.

He ended his solo practice two years ago and joined an Ortho practice (who I now know have been buying up oath, rheum and pain med practices all over the central part of the state). I think he thought he would be leaving his patients i good hands. Instead they are dumping patients that don't generate fees. If you are willing to have your insurance pay lots of money to have them shoot lidocaine into your body using an X-ray machine (fluoroscopy) they will keep you on (and as I over heard while i was waiting my turn - using three months of narcotics in month month only requires "a talk") and prescribe narcotics. Since that treatment only lasted about 10 days for me, I'm getting dumped. Sound a little angry do I, well I am.

So the other things. There is one non-narcotic pain med I know of, Tramadol, but I am allergic to it. Sorry finisului17, you mentioned it but I think someone mentioned a "non-narcotic pain medication."

In more than 35 years, I have not had joint pain at all until about a year and a half ago. about a year ago my Rheum suggested the Plaquenil and that took away the joint pain and the drenching sweats. That is what led me to a Lyme diagnosis. I'm not ready to consider HBOT due to expense and so far I'm not really sold on it. Maybe later. Same with Ozone Therapy.

I've tried Amytriptiline, Savella, Cymbalta and every other antidepressant/pain med. None do a thing for me except make me gain weight.

sayyadina, the reason I made this post is that I do know that treatment is important. If I take my hydrocodone with soma on a schedule along with other meds at the right times, I am able to keep my pain to a 7 or lower (most of the time). if i miss a dose because i have to drive somewhere or some other reason, it takes a couple of days to get everything back under controls. My pain is never lower than a 4 which for many people is enough to keep them in bed. it's my best day.

So I have done massage, acupuncture and TENS as well as trigger point injections and none ever last very long. Having to drive back and forth to get a massage or acupuncture generally reduces the effect. i haven't tried ultrasound and likely won't since right now I don't have any doctor other than my PCP and she isn't likely to suggest that. I've also done hypnosis and biofeedback. Both work sometimes, but when your pain level is really high it's hard to get deep enough for wither to work very well at all. I've also used warm water therapy, but again the effect doesn't last long.

Unfortunately, my pain is pretty much all over body, always.

On a scale of 10, without narcotics, my pain is no less than an 8.5 and if I miss more than two doses it jumps to a 100. When I say that people think, you're exaggerating. I'm not. Imagine the worst pain you've ever felt. The worst labor pain you've had and imagine it never going away, being there constantly. Or a kidney stone you don't pass, ever. Imagine the pain being so strong you are throwing up. That's me.

The hydrocodone only brings things down about 3 on the scale, but it makes things bearable.

I do think that treatment for Lyme&Co will resolve all of my symptoms including my pain, but that is a long way off. Without relief from the pain I am not going to get very far with the Lyme&co.

As far as I know there isn't an LLND in the area. I was seeing (or saw once) the same LLMD as teragram. As far as I know, everyone is looking out of state right now. She (the LLMD with Lyme) is the only one in the area since the Medical board stripped Dr Jemsek of his license (and Blue Cross and friends bankrupted him). We also have Duke Med which has a doc that does nothing but right about how Lyme can't persist and chronic Lyme doesn't exist.
I've been taking Gabapentin for 15 years and I am at the max dose. I tried Lyrica and although it did help with the pain, it left me crawling to the bathroom because the walls spin. So that's out.

So I will look into circumin, hypericum, arnica, and ledum. This is the reason I made the original post, I am looking for herbal and homeopathic solutions.

PeteZa - at this point I don't think I have Fibromyalgia. I know I have Lyme&Co and I expect that with treatment all my fibro symptoms will resolve. i would caution your niece. I was her many years ago. I worked full time, had an elementary schooler, was pregnant and going to school for my Master's degree. Powering through it is the only thing you can do and it works for a while. Eventually, your body stops responding when you tell it to keep going and you just can't. i reached a point where I was going home at lunch to sleep and it was a 50/50 shot as to if I would make it back to work. When i stopped working and filed for disability, i continued to send my three year old to day care because i couldn't take care of myself never mind a child. Talk her into getting tested for Lyme. It's worth the cost of the test because she still has a lot of time left with her kids. Mine are 23 and 16 and I missed a lot. At the time, no one knew Lyme caused these symptoms but now we know. I know how she feels about hugs - i have that problem too. Sometimes being touched is the absolute worst torture. Hard to deal with when you have young kids.

I thank you all for your ideas and any that anyone else has. I am not discounting anything, but some i have already tried and others I am still evaluating. It is unfortunate that I have something that works but is being taken away because it doesn't generate fees.

Sorry if I sound ungrateful, I'm not. I'm just mad at the world (or rather the medical community) right now.

Thanks, Kim

Ya know, it makes me sad to hear of people accepting Fibro as a diagnosis - it's not. It's a catch-all phrase for a certain constellation of symptoms that often has a treatable cause.....very often, that cause is hypothyroidism; and it could also be Lyme.

Here's some info about "fibro" and hypothyroidism:

www.thyroiduk.org.uk/tuk/related_conditions/Fibromyalgia-medical-mystery-solved.html

One of the main problems with hypothyroidism diagnosis is that it very often doesn't happen when it should. Why? Because all too many doctors look at "normal" (aka in-range) thyroid test results and declare the patient "normal" when he/she is anything but.

How does this happen? Well, labs create reference ranges based upon the blood draws they do. Sick people get blood drawn most often. Lab ranges are skewed towards unhealthy levels.

And, too many doctors were taught in medical school that the TSH test is the gold standard for diagnosis and treatment of thyroid disease. TSH is a pituitary hormone and looking at its level in the blood is like looking at the odometer in attempts at figuring out how much gas is in your tank.

Thyroid-savvy doctors know to check the actual levels of thyroid hormone....and they know the types of levels healthy people have.

Yes, there are other possible causes of fibro as listed in the link below....and I think they ALL should be explored before anyone accepts a fibro diagnosis and a life of living in pain.

hypothyroidmom.com/10-root-causes-of-fibromyalgia-3-is-thyroid/

(it's too bad Lyme and Co's didn't make it to the list....)

Thank you guys.

cd, I do have hypothyroid. A very long time ago, i had the symptoms for hyperthyroid. I was so thin you could count my ribs. I asked my rheum to run a thyroid panel and the results were weird. The TSH pointed one way and the T3/T4 another so he sent me to an endocrinologist. He said some patients who catch thyroid really early have my exact presentation - symptoms point to hyperthyroid and bloodwork points to hypothyroid. He treats for hypo and people feel better. So my pcp continued it and we have adjusted my dose based on how i feel rather than my numbers. My pcp has found some patients feel better on the higher range and we keep it there. So that has been under control for a while, but its certainly can be a problem for many.

sayyadina, thank you for going through the effort to look all that up for me. I will do my research and figure out what might work for me.

I didn't mean to brush off everyone's ideas that treatment for Lyme will make the pain go away. I fully expect that but I am having some trouble getting started. I started out with Plaquenil for joint pain and felt better with many of my worst symptoms abating but lately i have begun to feel worse with symptoms returning. Pretty sure detox isn't working. Around Thanksgiving i got back genetic results that seem to indicate there are blockages in my liver detox cycles. So right now I am trying to get the sorted. After that I have a pretty significant load of bugs from 35+ years so I expect it will take time. I can't imagine getting through all that without pain relief.

So thank you all.

Everyone have a great day,
Kim