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Severe Joint/Muscle Pain (new member)

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Posted 3/4/2011 1:40 PM (GMT 0)

Hello Everyone,

I'm Addie and I have Lyme Disease. I had it for nearly a year before I was tested and diagnosed and given 21 days of Doxy antibiotics but they didn't help my symptoms (they did make me vomit daily, however).

I went to a few rheumatologists and an infectious disease doctor and while most of the doctors I saw disagreed with e/o (yes chronic lyme exisists.....no such thing as chronic lyme...you have fibromyalgia...21 days of Doxy should have sufficed....etc.) eventually the Infectious Disease doctor ordered a spinal tap (after which I had the worst 10-day long migraine and now suffer from migraines regularly) and then had a catheter threaded through my arm and to my heart into which I administered 2 grams of antibiotics daily for 26 days.

I didn't feel any improvements for 6 months. In the meantime I was fired from my job due to my illness. My entire life changed. I no longer spent time with friends and I barely saw my family.

I lost 60 lbs and looked like death warmed over.

I'm feeling a bit better these days but I still wake up in the middle of the night in excruciating pain. I was taking tramadol for about a year and recently switched to Nucynta for pain, which seems to be helping for now. The most effective pain medication has been percocet or the new form of oxycontin but the risk of addiction is scary and I definitly experience rebound pain with those particular meds.

I see a holistic practioner once a week and get massages as well. I take at least 4 hot showers a day- even in  the summer. I practice yoga and am a certified instructor and just started teaching classes again at a nearby women's gym.

But I'm afraid this incredible searing pain will never go away. It's been so long and it's devestating to be 30 years old and feel like a 90 year old.

I want my old body back. I want to be able to walk my adorable Schnauzer without one or both knees screaming in agony after walking 100 feet.

What do other Lyme sufferers do for pain? Which medications have helped the most? I try to stay positive but admittedly I get down and out sometimes.

If anyone feels like sharing their stories, experiences, or insights I'd be very grateful.

Thank you,

Addie

Posted 3/4/2011 8:10 PM (GMT 0)
Wow. Unbelievable. Have you been to an LLMD? Been tested for co-infections? This is your best bet. An infectious disease dr. WILL NOT get you well. While I have suffered from joint and muscle pain, my worst pain was in my face and is neurological in nature. I take neurontin at night and it really helps. Are you still on antibiotics? It sounds to me like you should be. I had terrible elbow, shoulder, knee, finger, ankle pain and they are all subsided now for the most past after almost 2 years on antibiotics. You should not be in pain and do not listen to those that say it will never go away because it will, with proper treatment. Keep posting and searching this forum. you will find great answers.
Posted 3/4/2011 11:42 PM (GMT 0)
Springsjean, What antibotic were you on for the 2 years? Did you have IV abx done as well?

Addie, welcome! This is an awesome web site! It requires a bit of time, but read the Intro. to Lyme at the top of the postings page and read through postings! There are so many who have shared about what they do, and are doing, on this path to freedom! In fact, last night I went and got epsom salt and hydrogen peroxide so I can begin the baths. (After I find the posting on how to do it! HA HA) Good luck to ya, Denail
Posted 3/5/2011 12:10 AM (GMT 0)
Denail,
The info is in the thread "New to Lyme" - giggle!! And good for you for starting the detox baths!!! You won't regret it!


Hi Addie!!
Welcome to our forum!! I am sorry to hear of the issues you are having, but I am glad you found us! I' sure you will find us to be a caring, helpful and understanding group!

As Denail said, it would be good for you to read through the thread at the top of the forum titled, "New to Lyme?....Start here!" even though you are not 'new' to Lyme, as it is packed full of really great info put together by the members here and has some very useful links as well!

ID docs follow a mis-guided set of recommendations for treatments. Of course there are exceptions to every rule. so once in a while someone will find an ID doc that really does understand how to treat tick-borne infections, but most come away with a story very similar to yours.

You mentioned that you see a Holistic Doc. Have you ever considered acupuncture? Acupuncture has been scientifically proven effective in reducing pain - especially chronic pain.

**In an effort of full disclosure - I am currently under treatment with acupuncture along with Chinese medicine and Western Herbology.**

That's wonderful that you have started teaching yoga again!!! Congrats!

Are you detoxing? Detoxing will help overall for sure, but soaking in a nice warm tub of Epsom salts & hydrogen peroxide will definitely soothe your knees as well! You can find all the information of what to get and how to go about detoxing (including dry skin brushing -very important!) in the thread "New to Lyme?".

I hope you continue to read about these infections - it'll help ensure that you are getting the proper treatment as you will better understand what you need & why. We also have a search function to help you narrow down your search for specific info!!

Please feel free to ask questions, offer advice, and welcome other new members!!!

Once again, welcome!!!
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