i am just wondering if anyone has found any success treating thier pain caused by lyme, co-infections and what they use so far i have found out that Valium seems tobe the only thing that helps a little, mostly nothin else has. Mine is more of a nerve pain and deep muscle pain.
i do have fentynal patches to use if i want but it is a pretty strong med and dont want to use unless have to.
Posts: 82 | From Northeast WI | Registered: Oct 2005
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From someone who has been at this for awhile now, I would say no matter what you end up using, do make sure that you getit under control as much as possible, because chronic pain can make you depressed, and also actually causes the brain to shrink. So, it is important to get on top of it.
Fentanyl patches have worked really well for me over all. I went from being in pain all the time, to have plenty of days in a row where it was hardly noticeable. I have done one patch for over a year, and it has made a big difference over all.
Then there are emergency pain days... I use Elavil to sleep at night with bad pain = it works really well on calming the nerve pain. There is also fast acting Fentanyl lolly pops on bad pain days.
For arthritic, muscle pain, some are really helped by Mobic.
Good luck and keep us posted!
Anneke
Posts: 364 | From California | Registered: Sep 2005
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posted
Welcome. I use Cymbalta for nerve pain and it's an antidepressant so it kills two problems with one pill. tic
-------------------- Adversity is the diamond dust heaven polishes it's jewels with. � Robert Leighton
Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time � all faiths welcome! Posts: 309 | From S.E. Mass | Registered: Apr 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Wow, two Aniek/Anneke's talking about pain
First question, are you working with a pain specialist? In my experience, a good pain specialist understands pain treatment much better than most lyme doctors. It's important to work with somebody who understands how pain works and how the medications work.
For nerve pain, a lot of people find help with Neurontin. You need to get to a pretty high dose for pain, I couldn't get there because I was on too many meds so it made me too tired.
I have succesfully controlled my muscle pain. My muscles were so tight and inflammed I couldn't move certain body parts. This is what helped me:
Flexeril. It's a muscle relaxer. I started taking 5mg a night, and increased slowly until I reached the maximum dosage of 30mg. There was no impact at all until I reached 20mg.
Many people try Flexeril without luck, I think there are two reasons. First, they stop at too low a dose. Second, they don't take it every night. They take it when they have pain. But it works best by being on it always. Ramping it up allows you to adjust to the fatigue, but waking up will always be hard on Flexeril.
Myofascial Release. This is a form of physical therapy that works to release tight muscles. It did nothing for me until I got to 20mg of Flexeril. Then it finally did have a good impact.
Vicodin. I use this for days I still have pain.
Strengthening and Stretching. Once my muscles began to relax, I worked with my physical therapist on stretching and strengthening the muscles.
Yoga. I eventually was able to return to yoga. I pushed myself through a lot of pain at first. My muscles would be tight for 2 days afterwards. But it paid off. I'm now the strongest I've ever been.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Virgil went from debilitating pain which only eased when walking the floor allnight to being able to sleep for short intervals to now being able to sleep all night.
For the immediate pain, homeopathic muscle relaxant and systemic enzyme, coupled with a nightly hot tub soak seemed to help the most.
He has only tingling in his hand now. His last hot soak was a few nights ago.
-------------------- Virgil and Mary Posts: 58 | From Wisconsin | Registered: Jul 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I use tramadol 3-4 times a day and Neurontin, high dose at night, along with Flexeril (I can't take more than 5 mg w/o being comatose the next day), and clonazepam.
I agree that the most important thing is staying on top of your pain. If you let it go it's really hard to get it back under control. If you keep it up regularly it's much easier to stay on top of it.
I use therapeutic massage, which incorporates myofascial release. I used to go to a chiro who practices active release therapy, but whoever does her billing couldn't get it right and I ended up having to pay it all out of pocket. So I decided I preferred the massage and concentrate my money on it now.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
lymednva,
If you take the Flexeril every night, you can slowly ramp up without being comatose. Waking up still is really hard, but besides that your body adapts. I was up to 30mg for over a year. Now I'm down to 10mg.
But, when I tried to add Neurontin with Flexeril I couldn't get over the fatigue. So I guess it could be that both together are too much.
I also know a great physical therapist who specailizes in myofascial release who is in Rockville, MD. If that's not too long a commute for you. He prints out claims forms and my insurance covered over 90%.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I have tried many...fentynal patch(with Percocet for break thru pain), vicoden, oxycontin, tramodal and methadose.
Now the only thing that seems to help is taking percocet every 8 hours. For break thru pain...hot baths.
I also take cymbalta and lyrica to help with RLS and periphial? pain.
Hope you find something that will help you, my Dr was very kind in trying different medications, strenghts and combinations.
good luck... Michele
Posts: 106 | From Texas | Registered: Jun 2005
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I think pain treatment, like Lyme treatment, is a very individual thing.
I don't post very much any more, as I've gotten my life back, but hearing offers of pain killers without actually addressing the source of the pain really hit a nerve with me. I was never prescribed pain killers. Instead, my LLMD helped me address the source of the problem.
So when my head felt like it was going to explode, my LLMD poked and prodded and found the muscle knots on the back of my skull. She gave me 'trigger point' injections - a needle filled with lidocaine to blissfully numb the area and bust up the spazm worked wonders.
When my shoulders and body ached, she gave me Flexeril, a muscle relaxant, to take at night.
For me, Flexeril was a godsend. It also helped knock me out and get some sleep while I got used to taking it. For many of us, the pain is muscle pain.
When my joints hurt, my LLMD had me address yeast with Diflucan. Within a week (after a fun herx), joint pain gone. Conclusion - stay away from sugar and carbs, and treat for yeast regularly.
Explore with your LLMD the sources of your pain - and hopefully with time you'll come up with a plan to keep you comfortable while getting you well.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Thanks everyone, i will work with my llmd and try to find a way to reduce the pain while going through treatment.
will really help if i could reduce the burning nerve pain , as that seems to be the most unbearable symtom.
Posts: 82 | From Northeast WI | Registered: Oct 2005
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posted
Prior to knowing I had Lyme I went to pain management for chronic pain. I was on all kinds of narcotics and did find them helpful in being able to function and deal with the joint/back/neck pain. I took various NSAIDs, vicodin, percocet, and actiq for a PRN and elavil and flexeril at night and Topomax for the nerve pain.
Topomax is an anti-seizure medication and acts to calm down the nerves. It works better for me than Neurontin and doesn't make me sleepy.
I also loved when my physical therapy included the pressure point massage. Physical therapy and now pilates is good.
The best thing has been treating the real cause- my Lyme. I am so happy to report that I am OFF pain medications after nearly 5 years of being on narcotics for pain control. I never thought I would be able to. I thought chronic pain was my life. There is hope
Good luck!
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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