Topic: Why hasn't any doctor offered me pain or sleep meds?
tailz
Unregistered
posted
I notice many of you are on pain or sleep meds - no doctor has ever offered me any for my Lyme pain and insomnia.
Is it my age? Is it because I'm single?
I know my mother had bottles of pain pills around when she was sick. She was 72 though, I think.
If you are on pain pills for Lyme, how old are you? And are you married? I should probably reword that, huh? It sounds like I'm proposing. lol
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My doctor will not give me pain or sleep meds either. He knows i am in pain. He just takes me off my abx when I am in too much pain... so i do not get better.
My whole life I have been in so much pain I could not walk very well, or do anything that someone my age (ages 7-20) could do.
All 23 doctors I saw over those years would look at me and say they knew I was in pain but would tell me its not worth possibly getting addicted, which when you look at it, is not very likely.
So now I have perminant pain responce because no one would help me with my chronic pain.
My arthritis doctor from before I was diagnosed with lyme would write me a perscription for pain meds, for my 'bursitis' and fybromialgia. He was the only one to recognize my pain.
And I had no problems with the meds, and they helped so much, I was much closer to living a normal life, walking upright, sitting without being in increadable pain, ect.
The truth is Drs are undersperscribing pain meds. Drs simply are not helping people with pain. They do not tell you about your options.
So I am going to a pain clininc in 5 days. I want to learn about my options for there is no reason for me to be in crazy amounts of pain all the time to the point all i can do is cry and pace/limp around my house all night and day.
Try a pain clinic, because there are more options that only pain meds. they can couple them up for a really good way to treat pain.
Also they can teach you ways to better manage, which you can cary on with you the rest of your life, and hopefully not the lyme!
I do not know how bad your pain is Tailz, but I really hope its not too bad! I know lyme pain can get so bad.
I have lived my life in so much pain that i cant really feel much of anything anymore. I have turned off. I Dissociate SOOO bad because of this. It has been my only way to get rid of the pain, for no one beleived i was in pain.
I have not ever known existance without pain. lol.
Sometimes we need help... It might be something to look into, or it might be something you can manage on your own.
It really depends on how managable the pain is for you on a daily basis.
posted
Yep - that's pretty much me. I had an elderly neighbor tell me this spring that I was walking better this year! (I'm 42.)
It's sick that they do this to people, and I have zero extra money to go seek out alternatives like these clinics. I'm sure they're not cheap.
And I already tried a baking soda bath - that's not helping tonight.
I took charcoal - that's not helping.
I was using a heating pad over the winter, but I actually burned my back with it and didn't even realize it initially because the burn hurt less than the Lyme.
In fact, it took 3 months of avoiding the heating pad to heal and to grow new skin back.
I know if I were an animal, with the pain I'm in right now, I'd have been euthanized by now.
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posted
Insurance sometimes pays for alternitive pain clinics.
Worth checkingout.
If not, tell your doctor, and ask. ITs worth asking. Tell him/her you would like to explore dealing with your pain see what he has to say.
Yeah, I once broke my ankle and walked on it just fine for a week and did not know really. When I would walk or stand on it, my body would start to shake and i would sweat profusly but the pain was not 'that bad' for me... cause I am so use to high levels of pain...
I hope you can get the help you need! it sounds like you need it.
posted
You broke your ankle and didn't know? I believe it! The few pain-free moments I've had in the last several years have taught me one thing -
Everything was hurting, but I'd become accustomed to the pain!
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
when I first got sick I told my PCP/ID doc how bad the pain is and he asked me if I needed pain meds. I said I was nervous about pain meds but needed them.
I think if you are very nrevous I think a good pain med is Tramadol as it is a synthertic narcotic. It took 80% of my pain away (did cause some nausea) I had to stop taking it because I started a med that interacted with it.
I think I would rather Tramadol instead of vicodin. (maybe a few vicodin just in case lol)
I think it is cruel for people to suffer in pain because some people may abuse the drugs. I have seen it first hand.
So thumbs up for pain meds!!
bye the way, I usually mind my own business but I think the previous post by BB was hurtful and really rude. Aren't we all here to support others? If you want to pick on people go somewhere else like sci.med.diseases.lyme. We want to help each other.
I dont think it is fair for anyone here to call someone mental unstable or crazy. I think many are to some to degree but What makes you so darn special?
If you were truly concerned why not PM someone and say hey I am worried about you today, are you ok vs. You are unstable and crap like that on public forums. Don't be a jerk!
Melissa Posts: 3905 | From USA | Registered: May 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Skyler can you post about your experience at the pain clinic when you return? I am curious if yo dont mind sharing!
Thanks Melissa
Oh tailz I am 28, married and a mom of 2 small kids. I only take it at night after running around after kids I get sore, and sometimes I am in so much pain I cant sleep.
And my hubby is home by then, but I could take my pain meds every 4 hours if I needed. Most of them dont make me loopy. I dont think you should be loopy from the meds.
Just as pain free as possible. I also take a once a day NSAID called Piroxicam which helped me alot.
Posts: 3905 | From USA | Registered: May 2007
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I went to a "pain management" doctor for 6 years before being diagnosed (and many others before that ~ probably had lyme 30 years or more) and she would never give me anything stronger than Ultracet which didn't do much for pain.
I asked her once (after going on Immunesupport and noticing many were on pain meds) if I could try something like Oxycodone. She said and I quote, "Oh my Lord, God, NO!!! You will get addicted!"
I started going to the Fibromyalgia and Fatigue Center in Atlanta and they are really good at helping with pain and anxiety. They don't treat you like your trying to get drugs because they know the pain we are suffering. I was also diagnosed with lyme through them using Igenex labs. They do treat for lyme.
They have around 15 centers across the US - you might be able to find one near you. I looked on their site and there is one in PA. While I was at mine one day, a lady had flown in from the Caymen Islands so people do travel to go to these places.
Now I can live a somewhat semi-normal life, workout at karate and stay out of bed most of the day although pain meds don't hit all the pain - maybe about 1/2 - 3/4 of it.
So just because a doctor calls themselves a pain management doc, doesn't mean they prescribe pain meds that are strong enough to help us.
If you Google Fibromyalgia and Fatigue Center look under "center locations" and you will see where they are located.
Anxiety is part of lyme and it would probably help you a lot to be on something like Xanax - it really has helped me. I finally realized my anxiety wasn't me - it was the lyme in my body.
posted
Thanks, merrygirl. I'm even afraid to reply on this forum anymore.
But I ate tuna fish yesterday because I crave protein and I haven't been able to eat any meat, fish, nuts, seeds, dairy, eggs, and most beans - I think I'm allergic.
My pain is even more intense when I eat something I shouldn't, but I apparently don't even have antibodies to prove some of my food allergies - only the egg allergy has been proven to date.
I'm curious though what other pain relief options are available, too.
karatelady - I had been on Klonopin for a good 15 or 16 years. At some point though, it was not helping.
This could have been because my Lyme had adapted to my dosage at the time, or it is possible I was not absorbing the medication due to chronic diarrhea from these infections and/or food allergies. I dropped to a rather skeletal 88 lbs.
Though I had frequently dropped to 92 lbs in the past, the weight loss was very specific for me - mostly upper body weight came off (face, arms, torso) to where you could see every bone in my face and upper body - consistent with liver toxicity and fatty liver disease.
My doctors, unfortunately, just looked at the numbers and were apparently waiting for me to meet the criteria for TPN, even one doctor who wrote in my records, "Patient looks older than stated age."
I am nervous about returning to this medication because my experience (having been treated like a drug addict) left an impression on my psyche that I will never forget. Plus, I recently read that this drug can cause liver damage.
I have not checked yet, but I believe the PA pain clinic is near Philly, and I'm lucky to be able to drive to my doctor's once a month. I'm not sure what to do.
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Tailz do not hesitate to post on this forum! You have a different perrspective on things which is a good thing.
A doctor may be more comfy rxing Tramadol/ultram sice it is a synthetic narcotic and is not considered a controlled substance. So just tell your doc your sick of the pain and I heard of this med do you think I could try it?
See what happens. No one ever just said here are some pain meds, I told them I was in pain and they asked if I would like some and I said yes. So I wouldn't wait for them to just offer it. Melissa
[ 11. August 2007, 02:21 PM: Message edited by: Jenifer ]
Posts: 3905 | From USA | Registered: May 2007
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tailz
Unregistered
posted
I am going to ask him for it - last night was brutal. I literally soaked the mattress and pillow with what turned out to be painful sweats, if you can imagine that.
It's kind of freaky, too - the bottom right side of my skull sweat more than the bottom left, and my entire torso sweat except for my left hip this time.
And doctors thought I was nuts when I would tell them the areas that sweat always coincided with the pain, and that I sweat 'unevenly'.
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
yeah go to web md and look it up as it has side effects like everything else. Made me queasy sometimes. And some meds interact like zoloft-
also SSRI like Zoloft has helped my pain as well. I have been on it, but doubled the dose and I am feeling decent. But I cant take Tramadol because of the Zoloft, but I know of others who have taken both with no problems..
Good Luck let me know how it goes. Normal dose I believe is 50-100mg at a time but I am no doc!
Posts: 3905 | From USA | Registered: May 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Hang in there Tailz!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
It has been my experience that I have had to ask for the pain or sleep medication. And, in some cases, have to be very persistent with the doctor so they know I really mean it.
I think for those of us who have been in pain alot, we start thinking it is normal and that we should have to put up with it. For me, I didn't realize how much pain I was in until I had relief.
For sleep it is similar. I had to be very "loud" about needing something for sleep. Not just "mention" it, but make it the focus of a conversation.
Or, go somewhere else - like people have mentioned pain management clinics. I went to an alternative one here in Maryland for a while.
Robin
Posts: 276 | From Maryland | Registered: Dec 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
p.s. Tailz- Lyme docs have been gone after for prescribing pain meds as well as abx!!!!!!!!!!!!! Patients have killed themselves with pain meds or sleep meds and then the docs get in trouble. If you are suicidal at all or the doctor thinks you may be then this could be why-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
In my experience I had so many more pressing issues going on when I first saw my now LLMD he dealt with them first.
I was bedridden from dysautonomia. I actually drove to the grocery/pharmacy with my feet on the dashboard when I was stopped at a light. Pretty scary, looking back on it!
It took a couple of months to get this situation to a more livable state. By then he thought I was fine on w=the one tramadol a day I had been rx'd by a previous doc.
I had to ask him outright if it was better for me to take 9 Aleve a day and one tramdol or more tramadol and fewer Aleve.
Of course he couldn't believe I was on that much Aleve, but I had told him that from the outset, he had just misinterpreted what I had said.
Our doctors are human and deal with so many patients it's easy for them to miss something. That's why we need to be vigilant and ask informed questions.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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tailz
Unregistered
posted
I honestly think I've pretended to not feel pain for so long, just to sort of blend in, that maybe I got really good at hiding it and it isn't as obvious as I thought it was.
I think, too, because my LLMD has Lyme himself, I expected him to know. Maybe not.
I just worry that he will push the SSRIs, and that's not what I'm needing right now, and some of those actually only proved to speed me up anyway.
californialyme - I probably am suicidal some nights, but like I just said, I hide it (during the day at least) - though I got close last Monday on the phone when my doc's receptionist gave me problems with my malaria retest, and I'd waited 10 days already to start my mino and quinine.
lymednva - Looking back, I actually took an OTC allergy sinus medication for the antihistamine (complete with Tylenol) every day for YEARS, because it seemed to alleviate my pain some and help me sleep.
This would make sense since at least some of my pain (back then) was allergic food reaction related.
Taking Tylenol daily like that had me worried, so I eventually switched to the OTC antihistamine alone when I found it - chlorpheniramine maleate. It worked GREAT back then - for years. In fact, I have no idea why, but it worked best when taken with food.
It doesn't have the same effect now. In fact, if I were to take this medication today for my pain, tomorrow I would have dizzy spells lying down - to the point where I feel as if my BP drops too low and I'm about to lose consciousness.
I have no idea what Klonopin would do to me today - it's been a year.
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Most doctors do not understand pain and how to treat pain. If you want your pain controlled, you need to find a good pain specialist. You can't expect a GP or LLMD to treat it.
There are lots of bad pain specialists out there though. It might take a few visits to find one you like.
In my experience, the good pain specialists use a combination of medicine and alternative methods including physical therapy, acupuncture and psychological therapy (to help you learn to cope with pain).
You also need to make sure the doctor understands how bad the pain is. A lot of us learn how to underplay pain. Don't do it in the doctor's office. Tell them what hurts, and describe the pain. If it's an 8 on the 1-10 pain scale, tell them that. Tell them how it limits your activities, like if you can't cook or work.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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I so feel for you! I get the same weird sweats you describe -- uneven, sometimes localized, with the worst of them often coming from the base of my skull, sometimes on one side, sometimes both.... and I mean sweats that literally leave the bed/pillow soaking wet! I've been through 3 long rounds of tx for babs (even though I am seronegative for it), and that hasn't gotten rid of them entirely, so I'm thinking it is either lyme or something else -- mycoplasma, something viral? May just be peripheral nervous system reacting to pain, I don't know.
As for pain tolerance -- I think a lot of us have an almost INHUMAN pain tolerance -- I know I do.
I'm having some old, large, ill-advised tattoos removed by laser, and the NP who is doing the treatment was utterly blown out of the water by my pain tolerance. She's done hundreds of these treatments, and has never encountered anyone who could go through laser on such a large tattoo without anaesthetic -- truly, it wasn't that bad, compared to the pain I live with regularly.
As for pain meds, they help. They don't rid me of the pain, but they do make it tolerable on most days. My LLNP is judicious about prescribing them (for good reason) but she does give me Vicodin regularly, knowing that I only use it when necessary. Lyme pain, for lots of us, is pretty recalcitrant to treatment with even very strong pain meds, sadly. Ultracet does nothing for me at all. Vicodin/Valium do help, but not all that much. I've been unwilling to go to anything stronger -- not only do I abhor the thought of one more doctor to visit (pain mgmt) but I am wary of taking anything too heavy duty...
One thing that has truly saved me has been migraine meds. I didn't realize how much they would help with not only the blinding headaches, but also the neck and spine pain that come along with them.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Tailz, my LLMD is the opposite. The PA on my last phone consult told me that if I didn't start sleeping better this month that I would have to start taking them!
I'm taking Valerian and Melatonin right now. I generally fall asleep okay, but these don't help me stay asleep.
She said it was critical for us to get enough sleep so we can heal.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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tailz
Unregistered
posted
I knew these sweats weren't normal. I can literally dehydrate in seconds. Some days I even sweat in the shower.
They were telling me last year that this was menopause - I remember looking at women my age and older and wondering why they all weren't jumping out of their skin like I was.
I tried something else too last year before I knew I had Lyme. I took a cotton ball with isopropyl rubbing alcohol on it and noticed that the areas that hurt the most turned the cotton ball black, as opposed to beige or no color.
My ex-husband can attest to this! He didn't believe me until I made him clean my back with cotton balls last year.
Most of my pain seems to radiate from one area in my spine off to the left and in the center of my spine - they had found a 'normal' hemangioma there, but something tells me there is a ball of something living in that hemangioma. I think a hemangioma is a blob of fat and/or blood embedded in bone.
My lymph nodes in my groin are enlarged again, too. This was something else I was accused of being overly concerned about.
I asked one doc to biopsy the lymph nodes and was quickly scolded, "Do you know the RISKS involved in a biopsy like that?" No - but I know the risks of chronic infection today for ignoring them.
I'm going to ask for something for pain though. And you could be right - I have no idea what I'm killing anymore.
Do you think an antiviral would be covered for Lyme? I know I test positive for EBV. I also had the Hep B vaccines since I worked in healthcare, and at one point, something was elevated but I was told that was because I had received the vaccines.
I wonder if heparin would be helpful since it thins the blood?
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I will put something about it up on this post, maybe create a new one.
Its just been so hard for me with pain. Ever seince i can remember i have been in SO much pain i have never been able to walk well becasue of the pain.
Every doctor I have seen with the exception of that one has looked at me and said sorry, and I was not asking for meds. They would pat me on the back (which hurt so bad, lol) and tell me to hang in there.... and now I will live like this the rest of my life because of the damage being in constant pain has done. ITs just sick drs will not help someone in pain.
I have seen older adults tend to get a little more respect than children and young adults. Everyone looks at me and thinks 'your young! you can keep going! hang in there. and i am done hanging in there, lol. Everyone thinks because I am young, I can handle it. Not right I tell you...
I am excited to see what they have to offer at the pain clinic! I know there are a few options out there, not just narcotics! Which no one had told me about. Its very exciting! I hate pain meds, so an alternitive will be a nice thing to look into.
My appointment is on friday!!!!! YAY! Hopefully no more pain!
posted
I am sorry you have found no one to understand your pain. Could your pain be causing some of things you are having trouble with?
I see a neurologist and he treats pain first!! I went to see him for fibro, and he said he treats pain 1st, then, in the order I have trouble: fatigue, no sleep, memory loss.
I have tried Ultram, duragesic patches w/ percocet for break thru pain, cymbalta, lyrica and then percocet. I know take 4 percocet a day, ambien and 400mg lyrica. He is not afraid to prescribe what an individual needs.
We can not heal if we suffer from pain and it must be addressed.
I hope you find some relief soon.
Oh, when I went to see him, my first visit, I let him know I was in the middle of a divorce, working full time and a wreck. I was in my early 40's. He still listened to my needs and we have been working together for 7 years now.
good luck. foggedup
Posts: 106 | From Texas | Registered: Jun 2005
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posted
Merrygirl you mentioned that Tramadol made you nausea. It did the same to me. I was wonderimg if you keep taking it do you ususally get over being mauseas or does anyone know?
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
sick- It worked so well or my pain the nausea was just an annoying side effect. I didnt get it every time. You could also ask for nausea meds, I take phenergan sometimes.
Hang in everyone-
Posts: 3905 | From USA | Registered: May 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Tailz, my very compassionate and excellent LLMD refuses to give me any kind of pain meds either, even when i have told him on two occassions that the pain i was experiencing was literally unbearable.
i could tell it made it made him feel awful to refuse me the meds. he knows i am perfectly "sane" and not suicidal, so my best guess why he refused is out of fear. perhaps of an accidental overdose caused by my very horrible short term memory or some such?
i think Aniek recommended that you see a pain specialist? Sounds like a great idea, and maybe one that your DR would feel good about too.
take care- dilly
[ 15. August 2007, 10:18 AM: Message edited by: Jenifer ]
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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1Bitten2XShy
Unregistered
posted
I was talking about pain meds (this thread actaully) with my husband, and he wonders if one the reasons some LLMD do not give pain meds, is that they base alot of their findings/treatment on symptoms and maybe feel the pain meds would mask some of the true symptoms that are going on, and we would not even be aware of them.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I have heard very prominent LLMDs say publicly they do not prescribe narcotic pain meds because they weaken the immune system. I find it ridiculous, honestly, because all the research shows pain weakens the immune system.
I beleive some are also nervous about adding one more thing that is considered controversial to their practice.
However, there are definitely LLMDs who prescribe narcotics. But generally, you want a pain specialist treating your pain just like you want an LLMD treating your Lyme. An LLMD doesn't have the time to keep up on all the new research into pain.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Cobweb
Unregistered
posted
Actually I got my pain meds following total hysterectomy/bladder repair-not from LLMD-just to clarify.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Wow- so simple but never ever EVER thought of that- re pain meds masking symptoms!!!! Never ever thought of it!!!!!!!!!!!!!!!!! May be true!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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1Bitten2XShy
Unregistered
posted
Yep CL, my husband is not much of a talker, much more a thinker, but when he does come up with something, I know he has given it alot of thought and usually it makes pretty good sense!
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