I can't get painkillers from my LLMD, so I have to go to my PCP for them.
She doesn't want to give me very much because she doesn't want to lose her liscence.
She doesn't want to have any part in my Lyme treatment, so she writes in my chart that she is giving me meds for fibromyalgia, (and probably depression and anxiety).
I had a big episode with her this week because I am in constant pain and I can't handle it.
I think they are giving me small doses of painkillers but I am not sure because I have no one to compare it with.
All I know, is that when I went to the hospital 2 years ago because of the horrific pain , and they put me on a morphine drip and something callled maxaran (or something),,,,
that was the only time I haven't been in pain in three years!
This is unbearable.
I need help with this.
I talked to my LLMD and they said to cut back on my dose of antibiotics, and see if it was a bad herx,
nope, still in tons of pain,
then they suggested Indicid until I start on Plaquenil.
My PCP did not give me the Indicid, so I am suffering still.
I know I need to watch what I eat, take magnesium, hot baths and ginger
and stuff but I am so worn out from this pain.
I just called the pharmacist and asked her if Oxycontin was a fake sugar pill because it never helps me at all.
I even begged my PCP to call my LLMD and to find out how much pain I am in.
My PCP started to play mind games with me, and tried to accuse me of being an addict,,,,
my crying and sobbing sure didn't help.
I started to almost yell at her,
saying "This is not a game, this is not a game! I don't care about stupid painkillers, I am in so much pain! Lock me up in a mental institution if you want! I don't care! I can't handle the pain"
She had a change of heart and prescribed me my painkillers and gave me some extra but now the pharmacy won't release them, because they assume that she had made a mistake.
So all that, just to ask, what type of doses of percocet and oxycontin are some of you on?
Of course, if just PM me, ONLY if it is allowed here.
Thanks! Posted by missing (Member # 22437) on :
oops!
I meant
Please PM me about the doses, only if it is allowed.
Thanks!
Posted by sixgoofykids (Member # 11141) on :
Sorry for all the pain. I was only prescribed Norco for about two months by my LLMD. It's similar to Vicodin. The rest of the time, I didn't take anything and yeah, it stinks.
Have you tried coffee enemas? I got a lot of relief from them.
People may PM you the doses. We just keep them off the public board to protect our doctors.
Posted by missing (Member # 22437) on :
No, I haven't tried coffee enema's.
I have been talking to my ND about the pain but she hasn't had any Lyme patients that are in as much pain as me, so I think it is difficult for her to understand as well.
It hurts everywhere! Bones, muscles, nerves, joints! I feel like I am being electrocuted, and operated on without any anethesia!
I feel like a lion is ripping off my flesh chunk by chunk!
My spinal chord has hurt for 2 years as well.
My brain feels like it is exploding sometimes and that makes me want to start bashing my head against a wall.
It sure gives me more compassion for sick children and the elderly. This makes me want to volunteer and advocate for both when I am well.
I will ask my ND about coffee enema's but she is already looking at me strangely.
THANKS! a ton!
Posted by hadlyme (Member # 6364) on :
Is there any other LLMD that would be close to you? Maybe there needs to be a 're look' at what is going on with your body?
Posted by kday (Member # 22234) on :
Undermethylators can experience a lot of pain.
I don't like antidepressants myself as I am an overmethylator (SSRI/SNRI intolerant) but an SNRI may help with pain if you are an undermethylator. Maybe not.
Undermethylation is not your fault. Methylation plays a critical role in the synthesis of Serotonin, Norepinephrine, and Dopamine. Undermethylators tend to be deficient in these neurotransmitters, which can lead to pain or poor pain tolerance. Undermethylators also tend to feel depressed probably because of inadequate synthehsis of these neurotransmitters.
Undermethylators tend to have seasonal allergies. Elevated basophils and histamine can also indicate undermethylation.
If you think this sounds like you, you can Google "simplified methylation protocol" which basically involves taking a few active B vitamins with SAMe. I think this can help with your pain by restoring a more proper neurotransmitter synthesis, and restore adequate levels of glutathione (which in turn helps with pain and detox). This is sort of like dealing with the root cause rather than taking a drug, but restoring proper methylation doesn't work for everyone in the long run, and completely fixing it can take quite a long time as well.
If all this sounds too complicated and/or you can't get a doctor that can help you out, an SNRI might significantly help with your pain even if you really don't have depression. That's not what you'd be taking it for. Anti-depressants aren't just for depression. I am not really an SSRI/SNRI advocate, but I can't ignore that many get great results in pain reduction.
Another natural thing that can help great with pain reduction is Serrapeptase. However, your pain could initially get worse because the anti-fibrinogen activity can actually cause a herx or a herx like reaction with Lyme Disease. I take serrapeptase for another reason; so my IV doesn't clot (and it works so well my doctor made notes about it and suggests it to others).
If the pain is not tolerable, I understand that narcotics may be necessary. However, I think it's a good idea to try out these other avenues to see if they can replace narcotics, because if the pain is chronic, the narcotics probably won't relieve your pain in the long run.
I hope this makes some sense to you (excuse me if some of it is too technical), and I hope you find at least some of this information valuable.
I am just a patient and have no medical experience, but I tried my best to make sure the information I provided is accurate.
Posted by missing (Member # 22437) on :
Yes, some one did mention the methylator thing to me on this forum.
I never have allergies.
I am always super happy! Which is a little weird sometimes. I never feel down, just maybe irritable from the pain.
I am on the highest dose of cymbalta and on the narcotics too.
Oh,yeah, there was a time the pain went away for a while when I was on the very highest dose of gabapentin and amytriptalyne,
but I thought that cymbalta would act the same.
Maybe I need to switch.
I can handle pain. When I was training as a athelete, I did fitness classes with a sprained ankle, while I had Lyme, and also after two car accidents. This all happened to me in the last 2 years. I kept working out almost 40 hours per week.
I will talk to my LLMD again.
Maybe I will go back on Cymbalta and just keep trying everything else suggested here.
thanks a bunch!
Posted by kday (Member # 22234) on :
I forgot to mention, LDN (Low Dose Naltrexone) may help with pain as well. It's best to start off with a really low dose and slowly work up to about 4.5 mg, otherwise you may get unpleasant effects.
Normal dose naltrexone is actually used an opioid receptor antagonist, and LDN may interfere with the effectiveness of opiates to a certain degree. I am not an LDN expert, and I am not sure how much it interferes with opiates.
Some people absolutely love LDN, and it doesn't work for others. It's a bit touch and go for some reason.
I tried B-12 shots (3X) and they make the pain even more horrific and
SAM-e gives me severe stomach pain,
Posted by kday (Member # 22234) on :
quote:Originally posted by missing: oh yeah,
I tried B-12 shots (3X) and they make the pain even more horrific and
SAM-e gives me severe stomach pain,
Undermethylators tend have more trouble with high dose B12 shots....
As far as SAM-e stomach pain, maybe it's not for you, or maybe you should give another brand a try?
Perhaps anti-depressants with some metafolin could be easier to tolerate. There is a prescription called Deplin, but it contains an insane amount of metafolin (folate).
Though I don't do them myself, I agree coffee enemas could be helpful. Anything to help the liver and stimulate the release of glutathione.
But if Gabapentin helped significantly, perhaps you are dealing with neuropathic pain. I don't know much in that department.
Perhaps LDN might be better for neuropathic pain? It often works great for MS.
All I can do is throw out guesses.
Posted by Lymetoo (Member # 743) on :
I would try the gabapentin again. I hate that you are in so much pain!!
Posted by sammy (Member # 13952) on :
Lyrica might also help.
Posted by missing (Member # 22437) on :
tried Lyrica for a month and it did nothing,
just finished a huge crying spell here.
THe pain is so bad, I am not sure if I should go to hospital.
Just too unbearble.
I will ask about deplin, and about trying gabapentin again.
It is so painful, that i thought of going off all my meds and just letting myself die from Lyme, but
I don't want to miss out on all the fun of finally having IDSA admit ILADS was right,,, and the IDSA were actually idiots.
IDSA = I'D SA Y were were idiots!
or= I Don't Study Anything
Posted by Carol in PA (Member # 5338) on :
Missing, Are you taking anti-inflammatories?
Magnesium Fish oil Systemic enzymes
The SSRI's do more than help with depression, they also raise the pain threshold, so that it "doesn't hurt as much."
Carol
Posted by littlebit27 (Member # 24477) on :
Didn't read the other posts...
But, I tried everything under the sun...cat's claw (regular one) in a capsule helps me loads for my inflammation. Sasparilla greatly helped reduce the pain but it gave me stomach issues so I had to stop taking that.
I "manged" my pain with neurontin, flexeril, naproxen, and tylenol for the longest. Never had a pain free day.
I finally found a LLMD who prescribed me pain meds, once so far as that is all I've seen her. I'm hoping and praying she will continue to prescribe them because if I can feel this pain I'm having now (herxing) through the pain med...then I can only imagine how bad it would be without it.
Oh and my PCP thinks I'm a drug addict, actually now 2 PCPs in the area think I am a drug addict, because they dont' believe in Lyme.
Good Luck to you.
Posted by Hoosiers51 (Member # 15759) on :
Why hasn't your PCP referred you to a pain clinic or a pain specialist?
I agree with some of Kday's suggestions, like LDN or Serrapeptase. Otherwise, I'd see a doctor/clinic that specializes in pain.
You could also look into other conditions that cause pain, even if you do still have Lyme. Like ask your PCP if there are other conditions you should be treated for, like if there are any other fibromyalgia treatments they haven't tried, etc.
Those are just some ideas, but I don't have pain personally so I can't advise. So sorry....good luck.
Posted by Misfit (Member # 26270) on :
My brain isnt working this morning. But there are non narcotic pain relievers that might help. Ultram is the only one i can think of right now. Maybe she would be more willing to prescribe that? Im so sorry youre suffering. And get your dr's office to call the pharmacy and tell them to release those meds! Ive never heard of such a thing.
Posted by djf2005 (Member # 11449) on :
Ultram is a narcotic, just a low level synthetic one.
All of the above suggestions for pain are terrific.
I'd look into all of them.
Best
Derek
Posted by merrygirl (Member # 12041) on :
I can totally relate. I am going to a pain clinic now. which helps. But They are no joke. Drug tests every month. They too are reluctant to change my doses. I am going to ask for something different today and see what happens. The last time I did that they said I should take a pain med break. OH yeah thats real helpful.
I am so sorry you hurt so bad. A pain clinic may help you. they also do procedures (like trigger point injections) and sometimes accupuncture etc. in addition to rxing meds.
so you can ask pcp for a referral to a pain clinic. She will be happy to oblige.
hope it resolves soon for you. m
Posted by Lymetoo (Member # 743) on :
IDSA = I Don't Study Anything (good one, missing!)
Also try curcumin. May help some. Did someone mention bromelain?
Posted by maps (Member # 19758) on :
I too have been in unbearable pain in the left side flank pain, abdominal and pelvis area.
Finally have some relief and also some good information as to what the pain maybe.
I started neurontin and lamictal two weeks ago, I increase the dose every week. So far the pain is 75% better which is amazing as I have had the flank pain for three years and have made at least three visits to er and given the morphin drip.
I finally dicovered that at patientslikeme.com (which is an MS website) the pain some of us have is the same.
My upper pain is the same as the pain called an "ms hug" it is the nerves in the ribs.
The abdominal pain is also triggered by nerves in the abdominal cavities.
Posted by ChristieL (Member # 27786) on :
I am so sorry you are in such pain, but it's also good to know I am not the only one. Since my DX, this has been my biggest issue.
Contant, unrelenting, horrible, horrible pain.
It's everywhere; my "average" day is feeling like I have been run over by a car.
My "bad" day's it's more like a truck. I have yet to see a LLMD.
I go to my 2nd appt to an ID dr on Tuesday, and he is in for a rant.
He told me at our first visit; "i don't do pain", and the impression I got was his perception of my pain was "tolerable".
Ummm sorry, but HELL NO it is not.
I have been back on doxy for a month, just started my 2nd month prescribed by ID dr.
Which I know I am lucky and he did give me 10 generic percosets, which are the only pills that
even make life bearable.
I have improved in the last month, but the pain is still my constant bff.
I know EXACTLY how you feel, and my NP who has always been wonderful even seems to be acting
"funny" when I say how much pain I am in.
I am asking for a referal to a pain clinic on tue.
I know how you feel, it has changed my WHOLE life.
It is not my "imagination". It is NOT the normal aches and pains of aging. (i am 53)female.
It is so bad, that I feel I can't go on sometimes, no escape, no escape.
I have tried everything, and the high dose oxycodone (percoset/endoset) help the best but
by no means eliminate the pain, they make me able to stand, walk and not cry.
I am so sorry. I don't understand why I have so
much pain, or why you do, as a lot of people dont.
But really who cares what someone else has, we HAVE pain, and we have a RIGHT to help!
I am sending prayers for you, and my only hope
or salvation is I keep thinking, I can be cured and this pain will end.
I feel like how you described, as if I had been in a terrible crash, and have fractures
broken bones, and they say, take a few motrin.
Thats how it feels, muscles,bones, tendons, there really is not a part that doesn't hurt.
I do have to say that it (pain) got better after a week back on Doxy, but now it is slowly getting
worse again. I actually got some pain meds from a friend, had to take one at 3am, so I know your sleep is being
disrupted as well.
Please pm if you want, and I so do pray you find relief, and know that I do totally, totally understand what you are feeling Posted by lou (Member # 81) on :
Pain clinic. Lyme docs are sometimes taken down for prescribing major painkillers.
Posted by Keebler (Member # 12673) on :
- If the body is not able to process certain meds, this is something to consider:
As many sleep and pain meds can stress the liver and kidneys, here are some suggestions for sleep support that can safely nourish & calm the body: ---------------
Topic: How to find a LL ND (naturopathic doctor), acupuncturist, etc.
Includes how to find an ILADS-educated LL ND, an Acupuncturist, a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, etc.
Includes many articles and books on complementary / integrative methods - & RIFE links.
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