No one seems to want to answer the "pain" question as I posed it a week ago or so.......
Magnesium and fish oil are great, I've been taking them for years, however I don't believe those recommending this really know what bone crushing, knife stabbing, debilitating pain is.
I've been in terrible pain lately. I have no idea why and at this point I don't care why. I just need less pain. When serious pain set in for me, that was all I could see or feel.
I've started taking Vicoprofen and am renewing my state marijuana license. I also take muscle relaxers. I think these three meds are helping the most with pain. I'm hoping this is just a flare up that will subside before too long. If not, I will continue to manage pain in whatever way works.
I hope you get some pain relief soon Posts: 69 | From fort collins, co | Registered: Dec 2007
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posted
I take hydrocodone for pain. I was having bad joint pain and I was put on bactrim/flagyl, within 3 days the joint pain was almost gone. I still get stiffness but the pain is gone now.
Wish the debilatating fatigue and burning sensations would leave.
Posts: 383 | From Ar | Registered: May 2007
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posted
Inflammation reducing supplements like those listed above (Fish oil, herbals) are definitely helpful, but I also feel that more acute pain relief can help a patient regain more functionality.
Some patients benefit from what they're now calling "fibromyalgia" pain meds, like Lyrica. Most of the drugs in this category were originally for other conditions, but were shown to reduce nerve pain. If most of your pain is "burning" and "shallow", this might be a helpful route for you. Also note that these medications have many potential side effects, most notably fatigue and weight gain. However, many patients pain is unaffected because it is muscular or joint related.
For pain that isn't easy to control any other way, I suggest opioid pain relievers. Contrary to the experiences of some, when used properly under the guidance of a physician they are safe and effective. I've found that opiates help me feel better and that the euphoria effect helps to counter brain fog, which I've found nothing else capable of doing. I am not chemically dependent at the dose I'm taking, as I don't "jones" and if I miss or skip a dose I don't experience withdrawal symptoms. As far as side effects are concerned, constipation is the most common but simple over-the-counter stool softeners (non-laxative) have been helpful. In addition, I found that the laxative properties of antibiotic therapy are sometimes enough to counteract any constipation!
Sadly, I've found that many LLMDs don't "believe in" or do not wish the responsibility of prescribing any prescription pain medication to their patients. I personally feel that you can't claim to be treating "holistically" or the "whole person" without managing their pain from this intense and complex illness, but every physician has to make their own choice. If your LLMD doesn't entertain the use of pain therapy that is effective, I urge patients to seek out a pain management specialist that is lyme-friendly in your area. In most cases these physicians are anesthesiologists who have gone though a special fellowship in pain management.
Lastly while I have no personal experience with the following I've heard it be of great use to many: marijuana. If you happen to live in a state where Medical Cannabis is legal, it has shown to have great pain relieving properties, as well as other possible benefits. While it is not nearly as potent a pain reliever as opioid drugs, the near impossibility of physical dependence is a great bonus especially for those with long-term pain conditions. When patients come to me "unofficially", I always advise them not to smoke their marijuana if possible and seek a more healthful method of delivery such as eating (old fashioned pot brownies), or vaporizing with a ceramic-core vaporizer. If you live in a medical marijuana state, you'll have to look up your state's requirements for access.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
MS Contin .. It has saved me.
I find the comment that was written stating that eveyone they know who has used narcotics has died or committed suicide quite odd.
Without pain control of some sort i would be dead by now I am sure of it.
So.. Narcotics have their place. i have been on them 10 years and do not feel addicted.
You have to take them correctly and not expect full pain control and take enough only to hit the pain and not give you the narcotic side affects or problems.
I would not be able to walk each day or do anything at all .. period without narcotic pain medications.
I am not afraid to talk about it and i also do not think anyone should put it down or be afraid of it.
If you have addictions issues be honest with your doctor and of course it is to be considered and you do have to be intelligent and make the choice accordingly.
I am upset at doctors who will not prescribe what is needed and send people away in severe pain and suffering. When you are one of those who has severe ongoing constant pain you know what i am talking about.
If you have occasional aches and pain that are bothersome there are other methods that can work well as needed.. Such as over the counter or soaks or topicals. etc.
Good Luck I hope you find some relief..
Finding a good pain doctor like you look for a good LLMD is just as important in the treatment of this disease.
My pain med doctor is great and without that component I have no idea what i would do? I do not want to even think about it.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
Be careful with vitamin D and fish oil (which is very high is D) since D is a form of a steroid, and steroids suppress the immune system, something typically very damaging for lymies.
Benicar reduces inflammation without turning down the immune response.
In terms of pain meds, I've found that tramadol helps take the edge off.
Posts: 727 | From USA | Registered: Mar 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey D...
You said.. "TinCup- I'm referring to the joint pain and inflammation you get with Lyme."
For my joint pain and inflammation I take ibuprofen and use Glutathione. The later helps with getting rid of inflammation and the toxins that cause the pain and the IV push can give me much relief for 5-6 days.
posted
Reducing inflammation does help alleviate pain but not always achievable.
I take 2 injections a week of a biologic, Enbrel, and my joints are deterioating all the while. I need knee replacement and both jaws and can't have the surgeries until the LLMD gives the ok.
I already had my jaw surgery scheduled and in braces (required for total joint replacement) when I found out I had lyme.
My rheumatologist just did a full-body radio-active dye screen and said all my joints were lit up with inflammation.
I asked him why the Enbrel wasn't controlling the inflammation -- he didn't give an answer except to say I should never stop it.
Because I got so sick of getting shots and swallowing handfuls of meds I once dropped to 1 injection a week and within 3 weeks I was in such wretched pain I wanted to pack it up and go on in.
Some of us with this amount of inflammation need narcotics. The narcotics allow us some degree of functionality and to get out of the house once in a while.
We don't get buzzes off this stuff and don't abuse it because it's the end of the line as far as pain relief goes and we use it with great respect.
Posts: 245 | From Texas | Registered: Jul 2009
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bettyg
Unregistered
posted
lady,
did you take fosamax causing you now to have jaw replacement? it does that. 2 members had surgeries 2 yrs. ago. good luck.
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posted
Betty, the jaw bones deterioated due to arthritis even though I've been on Remicade, Methotrexate, and Enbrel over the years.
My rheumatologist had me start IV Boniva a year ago and when the surgeon found I was on Boniva he said to stop Boniva and wait a few months before surgery to avoid bone necrosis (bone death).
In the meantime I found out I had lyme and now know why my joint issues -- pain, stiffness, fatigue, and bone deterioation, continue even with treatment.
BTW, my rheumatologist said oral Boniva is ok to take but the IV Boniva may cause necrosis.
I won't get my surgery anytime soon because I just started ABX. Steriods are used aggressively which complicates the outcome and recovery.
Posts: 245 | From Texas | Registered: Jul 2009
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