I am curious how many of this group has severe pain to where you have to have a narcotic to relieve since it is so severe.
Posted by lyme987 (Member # 22148) on :
I started with tramadol for headaches and in a year had to move to fentaynl patches. I have such head pain I wouldn't even be able to get out of bed.
I've off fentalyl now but still use tramadol, anad fiorcet (which has barbituates) I hate using this stuff but when the pain is at a 12 for weeks and weeks you just can't go on.
yes, I've also tried all the homeopathic stuff, accupunture, biofeedback, music therapy, meditattion, etc. My head pain is excrutiating. Hope one day to solve it
Posted by sk8ter (Member # 8671) on :
I have hand, shoulder pain. I can't use pain killers so i use Klonopin which i only take.5mg every other day because of genetic detoxing issues and it works on the nerve pain which can be severe. It is a NMDA antiagonist and stops the pain receptors in the microglia. That along with the other NMDA antagonist drup LDN is a good combo for me with NO side effects. Prayer is what keeps me going.
Posted by onlyflippin (Member # 32260) on :
I have pain in most of my joints. One thing i am curious about are my previous injuries. I have a steel plate in my foot that really hurts at times. I can feel pain in bones i broke 20 years ago. I can barely move my shoulders at times. I had the shoulder problem 25 years ago and it was resolved, now in the last month it has come back.
Posted by scorpiogirl (Member # 31907) on :
I had severe pain but I never took anything. I found acupuncture to really help managed my pain. I just feel like I'm ingesting 100 pills a day already I just didn't want to take one more pill! But now that I started IV Invanz 80% of my pain is gone!! So I am very pleased w/ that med!
Posted by Parisa (Member # 10526) on :
My husband had severe pain but didn't want to get hooked on painkillers. In order to sleep, he alternated taking a sleeping pill one night and on the other night he would take Vicodin. He did this for about 9 months. If you don't sleep, it makes recovery that much harder.
Posted by ladyjenie (Member # 21098) on :
scorpiogirl, what is IV Invanz?
My pain is severe. It's in my spine, bone, muscle, nerves, and tissue. I use the Fentanyl patch, 25mcg and Tylenol #3 and even with that I don't get much relief.
A physician's assistant at my pain doc's office gave me a script for Fiorcet for breakthrough pain and my pain doc like to have exploded. He made me bring it in and he disposed of what I had left in the bottle.
I take Seroquel for sleep and usually don't wake up until morning unless I'm really ill and in pain. I couldn't sleep a wink without it so I don't even think of the addictive status.
I have used Methadone, Suboxone, Oxycontin, Ultram, and others without success. The Suboxone probably helped the most but this same pain doctor said he only gives it for cancer patients.
Posted by scorpiogirl (Member # 31907) on :
Lady,
I used to have pain from my neck to my feet. I have severe neurological involvement, peripheral neuropathy and unrelentless pain. Headaches, joints pain, shoulders pain, lower back pain, hip pain, knees pain and feet pain. I couldn't walk (every step felt like I was walking bare feet on uneven rocks). At night my heels hurt so bad that even if I managed to fall asleep the pain would wake me up! When I changed position my lower back felt like it was going to snap into two. I had a heat pad on my leg 24/7. Either that or the Castor Oil Pack for pain.
Acupuncture helped w/ the pain and sleep. But it was not permanent... I had to go in 3x a week and that can become pricey!
Anyway, I went on IV Invanz 17 days ago and the one thing I noticed w/in 8 days were that my pains were mostly gone!! I am coming up to my "bad week" shortly (when I have PMS my symptoms flare up and the pain is the worse that week)... so I'm anxiously waiting to see if the pain will return. Right now I'm able to walk, for example today I went to the Farmer's Market AND a grocery store. I made lunch and dessert. No way I could have done that before!
Invanz is a new antibiotics and pretty easy to tolerate. It took my body a week before I got used to it and now I don't have too many side effects or herxing on it. My LLMD did not want to put me on Rocephin because she said too many of her patients have lost their gall bladder even though they were on Actigall. I'm so greatful the pain is gone... but I still have a long way to go. It's like peeling the onion... one down still more layers to peel!
Posted by TerryK (Member # 8552) on :
I had severe pain all over my body for almost a decade. I don't do well with pain pills so I didn't take any.
After 6+ months on ceftriaxone the pain was 70% better. I realized just how bad it had been when I had a serious injury in my finger joint. All the doctors and nurses kept trying to give me pain pills and shots. They couldn't believe I could manage without.
The pain from the finger joint break, severe dislocation, having them try to put it back in the joint, 2 surgeries and rehailitation was a piece of cake compared to the pain I had from lyme.
As I explained to my doctor, all the pain I've had from the finger injury is a tiny drop compared to the ocean of lyme pain.
Terry
Posted by TerryK (Member # 8552) on :
ladie wrote:
The Suboxone probably helped the most but this same pain doctor said he only gives it for cancer patients.
I've had numerous family members die of cancer and frankly I think some lyme patients have pain just as bad as a cancer patient. It's not just the pain that lyme patients have in common with cancer patients but it's that sick all over feeling, a feeling like you are near death.
Posted by onlyflippin (Member # 32260) on :
terry where in or do you live?
Posted by TerryK (Member # 8552) on :
flippin - sent PM.
Posted by Jennifer70 (Member # 30280) on :
Severe pain all over, arthritic type pain in addition to fibromyalgia burning pain. fun! Im only taking flexeral because I don't want heavy narcotics.......although it's unbearable at times.
Posted by onlyflippin (Member # 32260) on :
Hey terry your mail box is full
Posted by Rene (Member # 4870) on :
Pain is my worst symptom.
Posted by anonymiss (Member # 32018) on :
Like onlyflippin, I have pain in most of my joints. Shoulders, elbows, knees, ankles, toes, wrists, jaw, neck, sometimes lower back.
I also have muscle aches and weakness, and stabbing, tearing, burning pains all over my body that come and go.
It's not quite so bad as others who are unable to get out of bed, but some mornings it really is all I can do to get up and hobble 15 feet from my bed to the couch and sit down.
Posted by kd888 (Member # 29652) on :
I had severe elbow pain--right arm-- would often put my arm in a sling. Lasted for over a year!
This finally went away when I started taking Ceftin over a month ago.
Also had severe upper back/spine pain that would come and go for months. Didn't take anything for it. Just toughed it out. That is finally resolving as well. Only twinges now.
Whenever I'd switch or add a new ABX I would get unbrearable headaches for about 3 days.
Stiff neck was the worst !!! Ever present for months on end. That is finally going away also.
I avoided prescription painkillers though, even when things were at their worst.
I really wanted to track my symptoms and their agression/regression without interference. The pain about drove me nuts! Probably should have taken something for it.
Posted by springshowers (Member # 19863) on :
I am not sure how the people who say they have severe pain can do without any medications. I would not be able to move or walk and would be immobile and not only cringing but screaming.
My mother passed away recently from cancer. Everyone was paniced over giving pain meds and though I agree that from what I saw her pain was not near as bad as lyme pain. Not even close. And they were able to use small amounts of meds to control it and even that was near too much. She was all loopy and out of it and I told them they were giving too much. They admitted at one point when someone is fighting the dying experience that they give more to help them ease into to death. Wow.
Well i am on MSContin Morpine Sulfate Controlled Release and and Hydromorphone (Dilaudid) for break through and I still am only able to keep the pain down a few notches. And no matter how good I feel with other symptoms and have resolved so many. The pain is stuck to me like glue. I do not have high inflammation markers and always wondered what the FMS causes are and if it is really lyme causing this or something else.
There is no way I would not be in the ER or hospital without the pain killers.
But when I got very ill I first had fatigue and was bedridden and that lasted about 4 months before pain just set in and it was severe from the start. ..
Luckily I have a very supportive doctor who listens and believes me and tries to give me some relief.
Posted by ladyjenie (Member # 21098) on :
My most severe pain was when I had my first neck fusion and came home from hospital with strep throat. I became severly ill overnight (which was probably the Lyme) and the pain hasn't stopped to this day. I was bedridden 9 years and I shake all over when I think back to those years. I begged to die and asked God that if he couldn't heal me to please take me (I'm still here, thank you Lord!).
I do not abuse my pain meds because I don't see myself getting off them anytime soon. I've alternated them thru my 12 years of illness often taking nothing trying to give my body a break only to suffer unmerciful pain in every muscle, nerve, bone, skin, and whatever else my body is made of -- oh, fat, too.
How is the IV Invanz better than Rocephin and is it given twice daily? Is it an antibiotic? I am supposed to get a PICC line soon so I can start IV Rocephin. Is the Invanz given in the same manner?
Posted by HopesAlive (Member # 29774) on :
Pain is so exhausting, and it is also an important, and often neglected piece to healing and building our immune systems. Just like we need that extra sleep, I believe our bodies just cannot heal when trying to use all resources to fight the pain. Pain control is SO very important in ALL diseases, so people should not try to "tough it out," but instead do whatever protocol you can find that will work for you while you are fighting this battle.
That is my two cents. Posted by TerryK (Member # 8552) on :
Spring, I'm so sorry to hear about your mom.
Pain is subjective so very hard to measure. Pain pills make me sick. I feel dizzy, sick to my stomach, depressed, tired, I get bloody noses and they take my brain function away. I need my brain function to figure out how to help myself and in turn help my family since the majority of them are sick too.
Everyone has their own method for dealing with the pain. I spent many years out of touch with my body. Not feeling my body as much as I could in order to bear the pain. I'm told it is a natural response to pain. I'm very good at altering my ability to feel my body which is why I was able to tolerate the mess with my finger and still not take pain meds.
I don't judge anyone who feels the need to take pain pills. I was ready to do so myself when I realized I was thinking about killing myself everyday because of the pain. Luckily for me my pain started to get better with lyme treatment.
BTW - my LLMD kept telling me that I had high markers for pain. I finally asked him how he could tell and he said because my kynurenine was elevated. I've looked around but haven't found a good explanation of how they are related. Someday I may take the time to research it adequately but I wanted to mention it in case it is helpful to anyone.
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