I have been trying to find a treatment that will help my arthritic pain--off and on I've been having debilitating levels of joint pain in my knees, lower back, hips, hands and feet.
Some days I limp around unable to stand up straight for awhile, then it may or may not get better with time. Some days the pain is tolerable, others, it is severe.
My LLMD had put me on Lyrica a few months ago for pain, and did not want to consider prescribing anything else. When I asked, he immediately cut me off, saying the Lyrica should work, just try that.
So I did. And I could not tolerate the side effects. Very woozy, had this awful feeling of disassociation--like I was just watching myself going through the motions of living.
Told my LLMD I could not tolerate the Lyrica, so he put me on Neurontin. I tried to make that work, but at low doses it did not touch the pain, and when I try ramping up the dose, I feel like a zombie all the next day, and still no pain relief.
So at my last appt, I said Neurontin and I were not getting along, so he put me BACK on Lyrica. I gave it a try for ten days, hoping that side effects for not be a problem if I toughed it out and allowed my body time to adjust to it.
No go with the Lyrica. The side effects are bad again, to the point of making me unable to function, and are absolutely no help with the arthritic pain I've been dealing with.
I can't take most anti-inflammatories, which used to help a lot, but now I have a NSAID induced peptic ulcer.
I called my LLMD's office the other day to ask about other options for pain relief, and was put through to a nurse's voicemail to leave a message (which is what always happens when I call about Rxs).
I left as detailed a message as I could manage about the type of pain I was experiencing, and my inability to tolerate either the Lyrica or the Neurontin.
A day and a half later, I get a call back from the nurse, telling me she spoke with the doctor, and I need to take either the Neurontin or the Lyrica, and he wants to add Lamictal.
I explained once again to the nurse that I can't tolerate the side effects of those meds, got a comment from her about how many Lyme patients have brain fog. At this point, I begin to get a little irritated, though I think I succeeded in staying calm and respectful with her.
I have had Lyme for nearly 10 years, been in treatment for 8. I know the difference between brain fog caused by Lyme and drug side effects, and tried to tell the nurse this.
Her response was that nearly all this LLMD's patients are on either Neurontin or Lyrica (she seemed to be implying if they can take it, why can't I?). I told her once again, I can't tolerate the side effects, and I'm starting class next week, I need to be mentally sharp.
Her response was to tell me I can try taking the Lamictal alone if I can't take the Lyrica or the Neurontin, and call her back in two weeks to let her know how it's working. She was not willing to discuss any other options with the doctor before then.
Lamictal, I have read, is primarily for seizures and bipolar disorders. I have done searches, and know that there are some who have used Lamictal along with Neurontin for nerve pain, but my pain is more from arthritis and joint inflammation.
So, if Neurontin and Lyrica are both ineffective in helping with the arthritic pain that I'm dealing with, I'm doubtful the Lamictal will help.
My feeling is, I don't need psych meds, I need pain meds and/or something with anti-inflammatory properties I can tolerate, that will realistically help with the type of pain I have.
Frankly, I'm concerned that my LLMD has gotten very gun shy about prescribing narcotic pain relievers after an incident with my husband last year.
My husband has had significant problems in recent years with addictions to pain meds; something I did not realize the extent of until everything blew up around 18 months ago. My husband was getting Rxs for Percocet from my LLMD, a local family doctor, and any other doctors he would go to, all at the same time, in violation of agreements with our LLMD, not to mention federal and state laws.
As result of his actions, the family doctor we were all seeing will no longer see any member of my family, and he wrote a letter to our LLMD. I don't know what accusations that doctor made in his letter, but they were bad enough that my LLMD said he would no longer see either of us as patients, either.
I suspect my husband was also filling extra Rxs for Percocet in my name as well (at the time, I was taking it for pain, and my LLMD was prescribing it), putting my integrity into question, as well.
Because of other unrelated issues, my husband and I separated last year for several months, and I initially thought I may divorce him.
While he were separated, I called my LLMD. I knew he had said he would no longer treat us, and I did not intend to press that issue; the reason I called was to ask if based on what my LLMD knew of my medical condition, if I would be eligible for disability.
I explained in my phone call that the reason I was seeking info on disability was because my husband and I had separated, and he had completely cut me off financially.
My LLMD called me later that day, and told me that since I was no longer with my husband, he would take me back as a patient. He told me he felt I was the "more credible" of the two of us. He had some pretty unflattering things to say about my husband.
My husband and I have since reconciled (and he is working on his addiction issues), and my LLMD has continued to see me as a patient, though he still refuses to take my husband back.
I am airing all this dirty laundry because I'm really concerned that my LLMD's resistance to prescribing anything else for me now for pain is simply lack of trust because of what happened with my husband.
And even if I'm being overly paranoid, and this is what my LLMD would prescribe no matter who I was, I really don't understand how these types of meds could help with my type of pain.
I'm at a loss. I hope I don't need to find a new LLMD if there are in fact trust issues at play here. Where I live, LLMDs are hard to come by.
Thoughts, anyone? Help!
Posted by seekhelp (Member # 15067) on :
Tough choice. I'd find a new LLMD and leave all that 'baggage' behind. You're paying doc good money. You really don't need that BS>
Posted by Maryland Mom (Member # 2043) on :
Yeah, seekhelp, that's sort of where I'm at. It's just so hard to find a good LLMD. I was hoping I wouldn't end up back in the "Seeking a Doctor" section after all this time.
Posted by Carol in PA (Member # 5338) on :
Another Lymie suggested FibroBoost to me.
I tried this, both of the brands that iHerb carries, and found that it did indeed help.
quote: FibroBoost contains Seanol, a unique polyphenol complex from brown algae (Ecklonia cava).
Polyphenol compounds are abundant in plants and their intake is associated with many important health-promoting qualities.
Seanol is a potent, marine-based source of polyphenolic compounds with strong antioxidant properties.
Unlike most land-based polyphenols that are hydrophilic (water-soluble), Seanol contains hydrophobic compounds that are able to cross the blood-brain barrier, allowing for antioxidant support of the brain and neural tissues.
FibroBoost has been studied for safety and efficacy for nearly two decades and has been found to support the heart, memory function, joints, muscle function, immune function, a healthy inflammatory response and healthy metabolism.
As far as I could figure out, the antioxidants in this product reduced inflammation and pain.
Carol
Posted by Carol in PA (Member # 5338) on :
Doctors in Europe prescribe systemic enzymes for relief of arthritis.
You can google for Serrapeptase arthritis, or for Wobenzym arthritis, for articles.
Thank you, Carol! I appreciate your sharing your thoughts and these links with me. I will look into these things.
Posted by Lemon-Lyme (Member # 19229) on :
I would recommend finding a pain specialist to treat your pain. LLMDs specialize in treating Lyme, but not necessarily in treating pain.
It can be hard to find a good pain specialist. But a good pain specialist will understand pain medications better.
Posted by Maryland Mom (Member # 2043) on :
Aniek, Going to a pain specialist is exactly what I'm planning to do.
I had another phone conversation with my LLMD's nurse yesterday, and she told me that the doctor wants me to see a pain specialist too, if I don't want to take the Lamictal and Lyrica or Neurontin.
This seems like a logical step, only it stings because this same doctor used to be willing to write me RXs for pretty much any pain meds I asked for, and some that I didn't even ask for, prior to what my husband did.
This same doctor is willing to try to treat my thyroid and adrenal insufficiency instead of sending me to a endocrinologist.
Apparently, he no longer trusts me, and I am thinking of seeking a new doctor, where I wouldn't have all this "baggage," as seekhelp suggested.
It just makes me so sad to think of how our doctor-patient relationship has been damaged.