Anyone know of something that really works for this terrible pain we endure? I just need to be able to get out of bed and take care of my family.
I have taken a nose dive with my symptoms since the surgery...does it typically take longer for a Lymie to recover from surgeries? That would be my guess.

Please share your ideas.

thanks
-Nancy

I'm sorry you're in so much pain.

Sorry you're in such pain. Regarding non-medicine/pill based pain management....

Have you tried music-assisted imagery?
One of the things I have found that helps me occaisionally is to put on a relaxation CD - you can pick one up at Target (if you don't have any) put it on, at a pleasing volume. I will breifly outline an imagery scenario...

Sit or lie in a comfortable position. Start with deep breathing, allow your breath to enter into your body, drawing it deep to your stomach. With each breath in, imagine the oxygen traveling to all your cells and with each breath out, imagine all the discomfort and illness being exhaled from your body.

Then I do a variety of images, sometimes I imagine myself walking along a beach, or on a mountain path. But lately my favorite one has been a healing energy that enters in my forehead, filling my head and brain, every cell as it moves over my face, down the neck.. shoulders, arms and pushing out my fingers all the 'keets'... this healing energy cleansing my body...

I imagine it continues through my torso, hips, down my legs and out my toes. For me I think of it going to the places with most discomfort, imagining it circulating and healing and releasing tension.

If you prefer a religious side of it, I sometimes imagine the Holy Spirit filling me with peace.

I don't know if this is helpful, but feel free to post additional questions with this.

Also please check the website for the American Pain Foundation. They have a pain patient bill of rights, along with other great resources you can share with your doctor.

Epsom salt is great!

If you are post surgery, you should definitely talk to the Dr. who ordered or did the surgery. You could be developing adhesions or other complications, which could affect your hips, etc.

Lyme can make recovery from surgery more difficult. My Lyme flared after an auto accident years ago, and doctors kept telling me I "should" be better than I was. Don't let them tell you this. You are as much better as you are. Not more and not less.

Have you had enough time to recover from the surgery? Between Lyme and surgery, you NEED to be able to rest enough.

Here is a previous post on a Patient's Right to Pain Relief. Pay attention to Sent's reply, referring to a patient bill of rights. I know that there is one in CA as well, and probably one where you live.

There are many things that can be used, from antiinflammatories, muscle relaxants, tricyclic antidepressants (which also reduce pain) to various opiod drugs, like vicodin, percocet, etc.

Heating pads too. I take Vicodin and Soma (muscle relaxer).

My llmd told me when a patient with LD has surgery and goes under the spiro. multiply because there's nothing to fight them off!

Because when you go under your white blood cells can't fight. So surgery for us IS very bad.

I've had several myself and never seemed to bounce back like everyone else.Now I know why.My lyme got worse.

I am on treatment and am having pain now. It's 3:30am and it woke me up.I sleep with a heating pad but my legs and joints hurt so bad.

I had to take half of a Vicodin and 2 somas.I'm drinking hot tea to help melt the meds. so they will work faster so I can go back to sleep.

YOU HAVE THE RIGHT FOR PAIN RELIEF!!!!!!!What about your PCP? Will he/she perscribe any?

Just watch out for constipation on pain meds. It can be very serious.

I hope you get some relief soon....Jamie

For lyme related pain I tried everything. I don't like taking narcotics, they don't actually relive pain, they just block your brain from recieving the information about the pain. Anti-inflamitories however reduce inflamation so that there is no pain being produced, this also helps promote healing in the area that is inflamed. Problem being that with lyme the inflamation is SO bad that many NSAIDs don't work (Non Steroidal Anti Inflamitory Drug) or destroy our stomachs or have bad side effects like those that were mentioned about celebrex.

I destroyed my stomach and esophagas with motrin/advil (same drug) though it is quite effective in higher doses. So that is out. I tried vioxx and celebrex it did nothing then I tried Bextra, I had to take quite a higher dose than what was indicated 20 mg 3x (20mg 1x is what is indicated but I am near 300lbs) to get the inflamation under control. Once I got it under control I was able to take a maintance dose of 20mg 1x.

Now that I have been on treatment this long I no longer need it. It is quite expensive, with out insurance it would have cost near 400.00 to fill each month's supply, but it was the only thing that actually stopped the pain, and did so consistantly.

So there is my two cents about pain relief. For immediate relief I would use a narcotic like percocet or some such thing, but for long term I would try to exhaust all NSAID options first. Torodol is also a good NSAID but it upsets my stomach, but it might not yours.

Oh yeah NSAIDs are non addictive too always a bennifit. Narcotics are addictive physically, not saying that you will become a junkie but you will eventually become physically addicted to them eventually. A while ago,I don't remember who, someone was switched from oral pain killers to a patch. She thought she was having a horrid herx, turns out she was detoxing from a physical addiction to the orals she was taking. It wasn't pleasant, and is always something that needs to be considered when taking narcotics for pain management.

It can take a while to find the right one, as some pain management doctors are not familiar with Lyme. And once you find a good one, you won't find a magic pill overnight.

It often takes more than one type of treatment to adequately control chronic pain. Some drugs help better with joint or muscle pain. It is also possible to find a drug that will help control the cause of pain (swelling, tightness, etc.) and in addition need a pain killer.

Vioxx, Celebrex, and other similar drugs are not pain killers. They are NSAIDs (Non-Steroidal Anti-Inflammatorie Drugs). They can help if you have inflammation that is causing the pain.

Flexeril is a muscle relaxer, although it actually works similar to some anti-depressants. It helps control muscle pain more than joint pain.

Then there are multiple classes of pain meds. Some there is a risk of physical dependancy, but this isn't addiction. People using narcotics and opiods to treat pain are much less likely to become addicted than people not in pain. There is less of the euphoric high if you are in pain.

Bottom line, find a doc that WILL treat your pain as a real thing.

Treating the source of your pain i.e. inflamation, muscle tension, will do more to aid in healing than just masking the pain with pain blockers like narcotics.

However, if you are in pain immediate relief may only be attained by such meds, and there is no need to suffer. That is why a pain specialist is so important.

Remember you have the right to not be in pain and have your pain taken seriously and treated.

Boy do we have things in common.

I have had ovarian cysts (so bad i lost an ovary), been diagnosed with IC and have had 4 surgeries in the past 15 months.

I felt fine (except for the pain) before my surgeries.

After, my first surgery i have been having low grade fevers off and on. I also have/had terrible joint pain.

I think surgery brings lyme out of hiding or make it much worse. Im so sorry that you are going through all of this. I think im still recovering from all of my sugeries.

For my cysts, endometriosis, and IC i was taking vicoprofen. I understand about rationing my drugs. I like vicoprofen because it had the ibuprofen in it to decrease inflammation.

I have been on doxycycline for 3 weeks now and my pain levels have decrease substationly with my bladder.

Good luck to you and you can email me anytime.

Jordan

I know we are meaning the same thing, but I think it's more important than semantics. Dependency and addiction mean 2 different things, and patients and doctors need to understand the difference. Especially because patients are often denied adequate pain meds because of a fear of addiction. I myself was scared of them because of fear of addiction.

I also agree with you that ideally, you try and find a medicine that stops the cause of the pain rather than masking the pain. But sometimes it isn't possible. My pain was about 95% under control with Flexeril before I started herxing. Now I need the pain meds about twice a week.

I found the following definitions on CNN.com health website. It's an interesting breakdown.

When you think about problems that pain medications can cause, you may think of addiction. But your body reacts to opioids in several ways:

Tolerance is the decreasing effect of a drug after regular use at a constant dose. Over time, you may need higher doses of the drug to achieve the same effect.

Physical dependence is a physiological state that occurs as your body adapts to certain medications taken regularly. Without the drug, you may experience withdrawal.

Psychological dependence is an emotional state that may occur as you become accustomed to taking a drug to experience its positive effects. Your body may or may not become physically dependent on the drug, but you believe that you need it.

Withdrawal is a set of symptoms you may experience after abruptly stopping or reducing the dose of certain drugs you've been taking regularly.

Addiction is a chronic, potentially relapsing disorder in which you compulsively seek and use drugs. Changes in the neurochemicals in your brain occur in addiction. Even though you know there may be serious consequences if you continue seeking and using drugs, you feel compelled to do so anyway.

Good post, liked the definitons, too bad it got cut off.

I've never tried Prolotherapy but have hear d mixed reviews.