posted
First of all, I hate that I even have to ask this question. I hate that it has come to this.
I have always had a high pain tolerance. I have had a fractured vertebrae and herniated discs and other Trigeminal neuralgia, never to take pain medication. I have either toughed it out or only taken very mild pain relievers to take the edge off.
Well no more. I cannot live with this pain anymore!! I have nerve pain and joint pain everywhere and I cannot sleep becasue of the pain.
It doesn't help that i am currently sore from falling down the stairs either. But regardless of the cause, I NEED my pain to go away!! I have been good at biofeedback and relaxation techniques but enough is enough.
What pain relievers have helped you the most? I do not want to be a zombie. I need to be functional, not sedated.
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
hi Ima-
i know what you mean on both counts- high tolerance of pain and unwillingness to add pain killers to the mix. sorry you're having so much pain.
my llmd recently switched me to plaquenil (in combo with zith & malarone). The plaq was more about combining with zith, but it is also prescribed for pain- largely of the arthritis kind. i noticed some difference within several days, mostly a decrease in neuropathies but also some reduction in crippling hip pain.
Nothing else has helped me, except drinking huge amounts of water, remembering to take magnesium, and knowing that at some point the Bb and Co. will move on to another bodypart, and at least the pain will seem a little more novel.
good luck- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hi Ima
For me, Advil gives me complete pain relief from arthritis.
I don't like taking it as it is damaging to the liver, gut, kidneys, but when the pain is so much it is affecting my sleep, I take it.
For me it worked far better than Ultram or Percoset.
I wish it were good for the body. I would eat it like candy.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
HI Ima,
Dr. J. in NC recently told me he has had great success treating paitients with neuropathic pain using a combination of Lyrica and Lamictal.
He just prescribed this for my 14 yo daughter...I'll let you know how it works for her.
She's been on Flexeril, Ultram, Ultram ER, and Lortab....they either do nothing or make her feel drunk, in addition to continuing to feel her pain.
She's been in pain daily since early September, 1st in the GI tract, but since October in her spine...from her neck to her tailbone, and throughout her body...shoulders, arms, legs, etc...
Chronic pain is bad for you physically and mentally.
I'm sorry you are suffering. Hope this helps you.
Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
The strongest thing I've been on is oxycodone...but it doesn't really hit the deep pain.
I take advil liquigels (2 at a time). Sometimes it helps, sometimes not.
It's amazing thAT we have to beg doctors for pain relief and their biggest concern is that we might get addicted!
I don't care if I get addicted at this point. I'll deal with that secondary to the lyme. My doc actually sent me to a pain clinic and they told me they couldn't help me....they didn't know how to treat lyme pain as it moves all of the time. (I think they were originally hoping to give me a spinal pain block. NO WAY!)
I'll keep reading this thread to see what others have used as well. Thanks for bringing it up.
Posts: 867 | From PA | Registered: Jan 2006
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posted
I started with tyleon and advil four years ago. For two years I took tramadol, 100 mg 3 x day. The pain level and chronicity increased nevertheless. I have need 15 mg morphine 1 or 2 x day for the last year or so. Now I am off all pain meds, because my pain only visits as a dull ache, low enough for advil, low enough for nothing much of the time. Looking back, I think I was undermedicated for pain.
Also, I did take marinol for a while nausea was severe as well as it takes care of that.
I think we don't have to "beg". We have to assertively explain how severe the pain is.
Also, I think going to a pain specialist and/or a doctor who understandds that 2/3 of us chronic lymies have as much pain as post operative patients.
Of course, different bodies are going to respond differently to any medication.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Ima,
I was taking 4-6 a day Neurotin,(up to but usually 8 /day) Tramadol, Tylenol,(a lot every day), plus 2 Citrical plus, 2 magnesium OTC, 2 Glucosomine Clondritin of Osteo-Biflex brand. Cant believe any other 'brands' brings back more pain,,, like anything else wont touch it.
I have weaned myself down to the 2 Tramadols a day plus the Citrical,magnesium and Osteo- Biflex 2 a day No neuratin,no tylenol.
I would suggest taking enough suplements, that CAN help. Then get on a non-additive narcotic drug like Tramadol. And have a doc throw in some Neurotin. take enough of it the pain has to go away!!
The doc, years ago, threw away my arthritis meds which werent working too good and went to the narcotic pain meds,seemed to help stomach issues ,,,some.
I usually had to take 4 Aciphex a day to control indigestion and it didnt completely take it away either. All the money I wasted on such junk.
I threw away most every med IF it wasnt for pain. Now I take very few a day, I feel better and function better plus have lots more money left over than paying for stuff that didnt work anyway.
Recently I quit drinking any milk(Like in cereal),,,that helped too.
Hope you find what works for YOU!!!! Its a trial and error at best,,,keep searching.
If you take something for 60-90 days,quit and pain increases in a few days,,,you know,,,go back on, then it goes away. Stick with that product!!!
Maybe not right,,,but right for --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
IMA, I'm like you... I take almost no pain meds. I'm in pain, all of the time and just deal with it. (I take an advil about once a month and occasional soma or darvon, both too mild to do much for pain)
My only relief is Xanax to sleep and that helps.
That said... the thing with pain is to break the cycle. Even if you have to take a narcotic and be wasted for a day or 3 (or even a few hours) sometimes that's enough to take it down to a managable level. Like a little vacation.
Have you got anything with oxycodone, hydrocodone... (even darvocet which is milder and would have to be taken longer to get it to work) in the house?
(Most times for me, if I take 1/2 of one of these pills it's enough to take the edge off giving me a break for a few hours. Then I can cope again.)
I'm not terribly fond of neurontin because it really does zombify but it may be effective for trigeminal neuralgia, at least temporarily.
If I have to take one of the synthetic opiates my preferrance is Vicoprofen, I only take a half but the ibuprofen instead of tylenol works better and is likely less toxic than acetominophen. If I want or have to I can take a second advil with it.
I'm really sorry to hear about the stairs on top of eveything else. Ouch! I hope you get some relief soon.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Celadrin (natural anti-inflammatory available in health food stores) and magnesium glycinate (cheapest is KAL or BlueBonnet called chelated magnesium).
Celadrin is cheapest for me via Doctor's Best brand via vitacost.com.
KAL you can get through alot of mail order companies.
You might have to pay more to get it through vitaminshoppe.com.
I've paid more for a "pharmaceutical grade" magnesium glycinate (4X as much!), and found it only to be about 10% more effective judging on muscle/joint pain and amount needed to reach bowel tolerance.
Oh, and let me add that a low carb diet is a must!
Otherwise neuropathies are so bad I'm twitching and yelping.
Posts: 233 | From United States | Registered: Oct 2006
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posted
I can only speak for what seems to help my daughter, 28 year old, who has been in severe pain for more than 6 years (not only joint pain, but also severe migraines).
Her high tolerance for narcotics is something that we've been told is an effect of Lyme disease.
She takes the following twice every day:
4 - 10/325 Hydrocodone (Vicodin 8 total a day) 4 - 8Mg Hydromorpone (Dilaudid 8 total a day) 1 - 100 Sertraline (Zoloft 1 a day) 1 - 7.5 Mg Meloxicam (Zobic 7 1 a day) anti-inflammatory
Just before bedtime as a sleep aid:
3 - .5Mg Alprazolam (Xanax) 2 - 10Mg Methadone
Is she addicted to these narcotics - No Is she dependent on these narcotics - Yes
Is the dependence worse than the Lyme pain - No
Once she's able to have any semblance of a normal life we will be working with her LLMD and her pain mangement doctor to get her of the narcotics.
Posts: 681 | From California | Registered: Oct 2005
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posted
Thanks everybody for your input, experiences, and concerns.
I have an appt this week with doc. Until then I am taking lots of OTC - anything I can get my hands on.
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I totally agree with TrueBlue about "breaking the cycle of pain"...SO TRUE!!! I take Cymbalta, 90 mg a day, an antidepressant also FDA approved for neuropathic pain. That cut my pain about in half, but took a couple of weeks to work. I take Vicodan when it's real bad, otherwise I DO eat ibuprophen like it's candy, but now have traces of blood in my urine (from that I'm sure). It also only works for me if I take it every other day or so.
So interesting to hear high tolerance to these meds could be from Lyme; I've never heard that before! My sleep problem is the hardest to treat; I can take enough tranquilizers to put down an elephant and still not fall asleep!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Can't do IBS or many other pain meds because of stomach problems but ultram & tylonal help. But the ultam does tend to wire me up.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Don't feel bad about needing pain meds. Lyme causes severe pain. There are great meds out there to control them.
Not treating pain weakens the immune system. It can also change the nervous system making pain even worse. Most of the meds are not as bad as the media makes them out to be.
The type of pain medication is really going to depend on what your pain is.
I have mostly muscle pain and referred pain from the tight and swollen muscles. Flexeril helped the most with this. It does make you very tired at first, but if you take it daily you get used to it.
I started at 5mg a night, and increased by 5mg every week until I got to 30mg. I needed 30mg for it to work. It also should be taken every day for chronic pain. People try 5 or 10mg for Lyme pain and give up because it doesn't help.
I also have great relief from Vicodin. I was only foggy from it the first few times I took it. From then on, it gives me energy because it gets rid of the pain.
I've been on Vicodin for 3 years and no addiction. There are many days I don't take any, or don't take it until late in the day. I have a prescription allowing 5 a day, and at the most take 3 a day.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Diathermy, the physical therapy kind. Research it.
It was the standard treatment for musculoskeletal pain from disease or injury for decades... until they started just giving us pills for everything.
The warmth increases blood circulation and promotes healing of inflamed tissues, and feels good in the process. The immune system is also stimulated by this process, helping to rid the area of infection.
It still works, but it is much less politically correct now and can be hard to find.
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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quote:Originally posted by imanurse: First of all, I hate that I even have to ask this question. I hate that it has come to this.
I have always had a high pain tolerance. I have had a fractured vertebrae and herniated discs and other Trigeminal neuralgia, never to take pain medication. I have either toughed it out or only taken very mild pain relievers to take the edge off.
Well no more. I cannot live with this pain anymore!! I have nerve pain and joint pain everywhere and I cannot sleep becasue of the pain.
It doesn't help that i am currently sore from falling down the stairs either. But regardless of the cause, I NEED my pain to go away!! I have been good at biofeedback and relaxation techniques but enough is enough.
What pain relievers have helped you the most? I do not want to be a zombie. I need to be functional, not sedated.
Posts: 9 | From South Carolina | Registered: Jan 2007
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Everyone, I'm sorry I made a mistake and posted a blank reply. Forgive me, I'm new at this! I also see a great doc in NC who has put me on lamictal and lyrica. It's really calmed my nerve pain and has made it "tolerable" but hasn't completely taken it away.
You're all right, I struggle with the lack of pain relief from this disease everyday. It's extremely frustrating and exhausting. But what can we do, it's not like we have a choice!
Posts: 9 | From South Carolina | Registered: Jan 2007
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
ima,
very sorry you are suffering so much! for uti pain i took tramadol for a while - a couple of days until cirpro got rid of the uti. i have taken nabumetone for uti pain and carpal tunnel pain and that helps, however either of these are not safe to drive.
i was also prescribed naprocin for carpal tunnel, a relative of nabumetone. i have also taken to aleve with no problems with alertness.
i am fortunate not to have to take anything constantly.
i wish you relief - F-A-S-T
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I take vicodin or oxycodone when its bad. If its normal run of the mill pain asprin or mostly motrin ibuprohen really helps bring down inflamation. If its a back problem a good chiropractor really seems to help my wife's pain.
But for the aching & joint pain Ibuprophren=motrin and vicodin or oxycodone I alternate the last two every couple weeks. I also noticed once you get the inflamation and the pain down dont stop taking what got you there for at least another week then cut back down removing a dose everyday.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
for years, i took advil round the clock for pain, but ended up with leaky gut syndrome -- that stuff can really wreck your intestinal track.
now, i take a number of supplements that are helpful over time, but not immediately dramatic:
*magnesium glycinate or malate *resveratrol (also on buhner's lyme protocol) *zyflamend (anti-inflammatory herbs including ginger and tumeric) *cortef (really helps my muscle pain at times when i'm tired)
i also take vicodin when the pain is bad -- averaging one or two per day over a month, sometimes more, sometimes less. it really helps and gives me great energy because i get a break from the pain cycle.
i also don't think vicodin is as bad as some make out. in some ways, the worst thing about it is that it contains a lot of tylenol which can harm your liver (new guidelines say don't go over 4000 mg of tylenol a day), and it can deplete glutathione. vicodin w/o tylenol is called Norco. i've not used it but if you need a lot, that would be the way to go. also, supplementing with NAC and whey protein to rebuild glutathione stores is a good idea.
Soma (muscle relaxant) is also great for my pain and helps sleep.
oh, and epsom salt baths and FIR saunas and bodywork sometimes help me a lot. just taking the time to relax and get in tune with your parasympathic nervous system seems to decrease pain, a least a bit.
Posts: 47 | From California | Registered: Feb 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Here is a link to the Pain Foundation's Treatment Options for Patients. It looks very helpful, reviewing medications, therapy and alternative methods.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
I use to live on Advil...and was told that I could take up to 16 a day...which I did...for a long time.
Then, my guts started hurting and I took L-Glutamine which made the pain in the gut go away.
I don't sell it and I don't know why it works or how BUT...I started drinking the Xango juice and since then, I have been off all pain stuff. No liniments, no epsom salt baths, and NO ADVIL!
I keep on an Atkins-type diet and I feel great! Detox,detox,detox and stay away from nightshade veggies that hurt my joints.
Magnesium Malate with Malic Acid (formula developed for Fibromyalgia)by Source Naturals and a calcium supp. help with muscle spasms (charlie horse).
Hope this helps!
Posts: 4258 | From over there | Registered: Jul 2001
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I go to a pain clinic, and highly recommend this. They are much much better than the average dr. in helping to control pain.
I am on a Fentanyl patch. It lasts for 2-3 days, and emits a low constant dose of a very strong opiod. It has made a huge difference in the quality of my life. I went from horrible head and neck pain 24-7 to many days in a row without pain!
Contrary to the ignorant taboo out there in our culture, opiods are a safe, non toxic solution for chronic pain.
I too, used to "brave" it out in terms of the pain I lived with. It's a really silly approach actually. Would a diabetic "brave" it out by stopping insulin? Being in chronic pain is terrible on the brain and immune system. My biggest regret after getting out of daily pain was not having done it sooner!
Anneke
Posts: 364 | From California | Registered: Sep 2005
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Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Anneke,
Sometimes I read your posts about pain, and think it's me that wrote it. And we have almost the same name
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Ima, I am so sorry to hear that you are suffering so much. I apologize for not knowing more about your history or how you are treating Lyme, but what worked for me when I felt that I was on fire and so exhausted from the pain I didn't think the situation was sustainable, was IV rocephin. I had to add Zithromax to cover the tendon pain and mobility issues which temporarily made a lot for my liver to handle. To me, it makes sense to take away the pain by controlling the source of the pain- the infection. Other approaches seem kind of like putting a band-aid on a bullet wound. Hope you find a workable solution.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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posted
People are saying that chronic pain can wreak havoc on the immune system.
But, even if you take opiods, isn't the pain still present, just that your brain doesn't realize it?
Posts: 310 | From TN | Registered: Jan 2007
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I've had really good relief the past month with Boneset herb. It's about the same amount of relief as taking an aspirin for me. I'm on the Buhner core protocol and after a month of it my pain went away completely- i doubt I was in anywhere near as much pain as some of you- but the moderate body pain and roving shin/bone pain I felt was completely controllable with boneset.
Stephen Buhner says in his liver health book that boneset is one of the great under-appreciated herbs- he also uses it for liver issues (he's got Hepatitis C by the way so he really researched liver health) and in the LYme protocol from the Healing Lyme book he recommends it for bartonella and babesia treatment.
In the past I've used it for influenza- really works well for me in making me more comfortable. I've read in many different places that it was used successfully in the 1918 pandemic flu (ie think fatal bird flu, on a worldwide scale) in treating patients.
-------------------- Symptom Free!!! Thank you all!!!!
posted
Getting rid of toxins helped my wife's pain more than anything else, none of the pain medications helped her pain much at all. Taking DetoxMax Plus (twice as often as recommended on the label at first) helped her turn the corner and get on the road to recovery, then high doses of vitamin C to maintain.
-------------------- Posts: 83 | From Oxford, MS, USA | Registered: Jan 2004
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posted
Stretching in a warm swimming pool if possible. This always helped me for a week or two. The water has to be fairly warm to help. sick
Posts: 538 | From Iowa | Registered: Apr 2006
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posted
My pain goes up and down. Some of it is due to treatment.
I so understand how you feel. I always said I had a high pain tolerance level. Then it got so out of control, I would pray to die.
I can say a few things I found to help.
1) massage therapy (with the right therapist)
2) chiropractor (esp. if you find the right one)
3) keeping my diet clean (various foods will trigger pain, esp the burning pain) I think sugars, tomatoes, corn, flour and others (for me at least)
4) VICODIN has been a life saver for me, and I do mean that literally! (Also, it does not make me feel drugged. All the neruo pain meds I have used so far do.)
5) Vitamins w/ extra magnesium
There are others, but those are the top 5 that come to mind.
Posts: 240 | From MA | Registered: Nov 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
quote:Originally posted by jasonsmith: People are saying that chronic pain can wreak havoc on the immune system.
But, even if you take opiods, isn't the pain still present, just that your brain doesn't realize it?
I think it is the physical and emotional stress of experiencing the pain that causes the problems with the immune system. So if you don't feel the pain, you don't have those problems.
It's also likely related to the fact that when you are in pain, you are less active and unable to exercise. But that's just my own guess.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Vicodin is also my lifesaver! It's hard to get, but this pain is beyond anything I could ever explain.
I had 3 homebirths and would rather be in labor than experiencing this pain.
I take Tegretol, Dilantin daily and Xanax and Vicodin to keep my sanity whenever needed. Vicodin lets me function ok. Neurontin, Lyrica, Amitriptylene knocked me completely out.
Detox will give you relief, EFT can help also and some homeopathic remedies like arsenicum album or magnesia phosphorica.
Good luck,
Sonja
Posts: 35 | From Arizona | Registered: Dec 2006
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