posted
I'm currently on a Fentanyl Patch. Anyone familiar with this? It causes really bad nausea, and often puts me to sleep during the day, but the pain is a lot less.
Unfortunately, the pain is only controlled if I don't "overdo". "Overdo" means things like going for a short walk or trying to go out to dinner. Even a short car ride will set off the pain.
The pain is in my major joints, and upper back and neck as well as my muscles. The pain gets so bad it causes uncontrollable spasms. If I lay down, the spasms eventually settle down, if not, they continue until they are almost nonstop, and the spasms themselves hurt.
Because of the patch, baths are out of the question. Any suggestions?
THanks.
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You may have seen /done all this before. However, there may be something new here for you.
Magnesium might need to be increased up towards even 2,000 mg a day (always in divided doses, 2-4 x a day, though. Never all at once).
posted
Joints and muscles - doesn't sound like you're treating enough yet - when you find the treatments that work, that pain decreases.
Example - when I discovered that oral clindamycin worked for me, the pain in my muscles went to just about zero in a week's time!
When I discovered that turmeric powder works to take down joint pain, I capsule and take it a couple times every day.
Before I found out I had Lyme, I rotated pain meds so as not to get up too high on any of them. It was important to take them so I could sleep, and take pain breaks and feel somewhat sane again!
Red light tools are something that can take down pain - 660nm red light - wave it over where it hurts and pain decreases.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I find ice helps on the neck and head pain -- mine is primarily caused by meningeal swelling, which is common with Lyme. Ice at the base of the neck will often give me a lot of relief.
And yes, once treatment really gets working, the improvement is often tremendous and very fast.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Have you tried flexeril or gabapentin? Increasing my magnesium has helped me alot. Does your doc know you are in this much pain? Perhaps with their approval you may need a break of a few days from your abx to let things settle down.
Heat always made my muscle pain worse. Ice and cold packs seem to help more.
Posts: 1750 | From United States | Registered: Dec 2011
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posted
You will find that you can not over do activity until you are well again. Regardless of what every pain medication or supplements you take, you must pace yourself when you feel like you can do something.
Tumeric, or curcumin is wonderful for pain, but I find that brand name makes a difference on this one. I use Thorne, more expensive but it works much better and if you decide to try it, pm me for a good source online to purchase it.
Also, MSM in high doses is safe and also helps with pain. My holistic doctor has me on 10 grams twice a day and it is a miracle for me. He is also the one who suggested the Tumeric.
I have vicodin as back up, but honestly the supplements work better and a hot bath can really help a lot. I use epsom salts with baking soda for a detox bath. Does wonders for pain.
Ditto on the magnesium in your supplement regimen. You must take enough to off set what Lyme takes from your body.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
fish oil, ibuprofen, mag tab sr, coq10, and occasionally neurontin
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
fish oil, ibuprofen, mag tab sr, coq10, and occasionally neurontin
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I use Ultram (NOT the generic Tramadol) regularly at least 2xday to keep pain under control. Abx have helped enormously...i used to get IV Lidocaine 2xweek for it.
I agree with using ice and heat. I use acupuncture needles myself sometimes (years of it taught me which points help). Latest discovery is Arnica salve from Walmart...works on sore joints and muscles.
I take magnesium 3xday and Omega3 daily.
I would figure out how to relocate patches to allow epson salts/baking soda baths....they really help.
FWIW my spouse wore knee brace for his awful pain and fell from foot pain. He now is nearly 100% painfree thanks to abx!!! Hope I get there too. And so must you. I know how desperate you feel....just keep trying all of our ideas and see what helps.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
You may want to look into the SOTA Magnetic Pulser for the joint pain and the spasms.
It's one of the things that has helped me.
Systemic enzymes have helped me the most, reducing inflammation that causes pain.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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posted
I do yoga which hurts initially but helps overall, i also take half a xanax and half a flexeril at night because the pain keeps me up, that relaxes my whole body so i can sleep and eases the pain.
I also take curcumin, wobenzyme, fish oil, gluten free diet..etc. but I dont notice a huge difference from any of those changes. I am starting to lose wt though which will probably help with the inflammation.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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posted
I've also found yoga and stretching to be helpful, even though it does hurt initially. I've been taking Vicodin as needed.
I have a PICC line in, but still do the hot bath thing with the help of some creative saran wrapping. When I'm not up for that, though, my mom made me a little heating bag. She filled hers with corn, but you can use rice as well. Throw it in the microwave for a few minutes, and you have nice moist heat.
I'm also a big fan of using music to help chronic pain. Although, I never went for the Enya, relax-y type of music. I'm more of the distractingly loud angry punk leaning Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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posted
Thanks for all the replies. I'm having a heck of a time processing what I'm reading. It looks like I need to get on some magnesium.
The Fentanyl patch has been wonderful. I used to wake up in so much pain, it took forever to get dressed, because I had to stop every few minutes to wait for the pain to ease up enough to move. The problem with the patch is that it is a narcotic, which I really tried to avoid.
Baths are out of the question because of the patch - anything that raises body temperature makes the medicine absorb faster and can cause overdose.
We're trying to find kidney, liver, etc. support that my body likes. I keep having negative reactions to medicines and supplements alike - debilitating abdominal pain, gas, bloating and diarhea. Even things that I was doing fine for months on suddenly become a problem.
We're also trying to find something to attack the coinfection that's causing the pain, but it's such a struggle to find something my digestive tract can tolerate.
I've been off antibiotics for several months (to try to rest my GI Tract), and the other symptoms are starting to flare. Everything is trial and error, with more error than success.
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Here is a link to a great article on dealing with inflammation, pain, herxheimer reactions etc. The entire site has a ton of info you may find helpful.
There are also webinars and a facebook page you can ask your questions on.
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by Needing Hope: I keep having negative reactions to medicines and supplements alike - debilitating abdominal pain, gas, bloating and diarhea.
Have you tried making Kefir? It has a bunch of different good bacteria, and may help your gut recover.
I use the starter powder and regular milk. Whenever I drink it, I can see an improvement in function.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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posted
So i went to my pcp today and there was someone new in there CDHP located in so deerfield ma. went for my annual physical. she asks how i am feeling ? so i say first off terrible joint pain lower back knee pain that comes and goes burning sensation sometimes when i attempt to sleep.should i say TRY.WELL how long has this been going on since fall of 2008 when your associate left a message one friday evening sayin i am Sorry to tell you this you have chronic lyme? sO OKAY 3 WEEKS OF DOXY YOU WILL BE BETTER. I COMPLAINED and he said i really do not believe in it any ways so the other new practioner says you do not have 5 bands as the CDC says so you must have something else?SO BOTH MY PRIMARYS DO NOT WANT TO TREAT OR HELP. SEEN DOCTOR H FOR 2.5 YEARS E LOGMEADOW MA. MANY ANTIBIOTICS P;AGUENIL ETC?SHE DECIDED TO NOT KEEP HER APPT WITH ME ?? I HAVE THESE RASHES ON MY BODY THAT COME AND GO AND SORES THAT ITCH ON MY HANDS THAT SHE SAYS LOOKED LIKE EXCEMA (SP) SO A STEROID CREAM SHOULD BE USED..SORRY TO VENT I have two pcp AND I THOUGHT A GOOD LLMD WHO BY THE WAY HAS SUTTLEY DROPPED ME WHO WONT HELP OR DO NOT BELIEVE I FEEL LIKE I AM STUCK BETWEEN A ROCK AND A HARD PLACE!!!
Posts: 10 | From montague massachusetts | Registered: Aug 2012
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posted
Ellen, I looked at the website you suggested, but the brain fog is so bad right now, I just can't process what I'm reading. I'll try again later. Thanks for the info.
-------------------- Sick since 12/98. Finally Diagnosed with Lyme 4/10. Posts: 45 | From IL | Registered: Sep 2010
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posted
dragon08 - sorry you are feeling so lousy. We all understand your frustration!
It sounds like you need to see a new LLMD (Lyme-literate doctor)! Write a new post over in "Seeking a Doctor" requesting one.
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
Just a couple more things: please don't write the towns where doctors are located (Lymenet rules only allow the state to be mentioned) and don't use caps - it reads as if you are shouting. Thanks.
Posts: 9020 | From Illinois | Registered: May 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
lp, how much mag tab sr are you taking? I've got to cut down on the ibu.
I finally found the Niche mag tab sr at Kroger pharmacy and they were $5 cheaper than Walmart. But it looks like I'm going to be taking an awful lot of those large yellow horse pills.
Goodness at $35 a bottle for 100 ct?????
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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