randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i know lyme pain can be severe. I was diagnosed with RSD (reflux symphathetc dystrophy) a long time ago and I'm now pretty sure it was lyme.
several of my acquaintances are on heavy duty pain killers?
Do you know anybody who does these?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Greatcod
Unregistered
posted
I know a woman who has been on Fentenal (sp) patches for severe pain for years..it is an opiate. She has a teribble life, and has been largely bedbound for years. I hate Allen Steere, for what he's done to me and my friends, for the terrible lives we have because of his gross incompetence. Just thought I'd throw that in.
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Right On GreatCod !
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I used to be on fentanyl patches, now on MS Contin which is extended release morphine and vicodin for breakthrough. the chronic pain for this disease is very difficult to control.
I strongly suggest going a pain specialist to treat chronic pain. primary care, neurologists, rheumatologists etc do not know enough about pain control, unless they are also specialize in that area too.
(except for neurologists for some types of headaches, migraines)
going to a doctor who is not a pain specialist to treat chronic pain is like going to a doctor who is not a LLMD to treat lyme. its a very specific individualized treatment and its trial and error, very symptom specific
Posts: 615 | From maryland | Registered: Oct 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I take Vicodin & Oxycontin. I try to take the smallest possible dose when it's needed.
It helps alot. I don't think I would be able to function on some days without it. I have found no adverse effects. I feel a bit spaced out if I take too much but it wears off.
I cut the pills in half & if it's not strong enough, I take another half. I have found no ill effects from it. If my pain is less, I don't take it.
Much of the fear of becoming addicted is not accurate. I think something like 98.5% of people with chronic pain do not become addicted to pain meds.
You may require more due to tolerance but that is not addiction. Pain medication help people to live a normal life. The people who abuse it are mostly not people in chronic pain - they just want to find something to get high.
It would be nice to go to a pain clinic but I don't have health insurance.
Many doctors are adverse to prescribing pain meds because the gov't hassles them. This is why many of them refuse to give any prescriptions out for Oxycontin, etc.
Everyone has a different tolerance to pain. You have to experiment & find what's best to help. It's not about being an addict.
That is a remnant of the "war on drugs" & it's not accurate.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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quote:Originally posted by sparkle7: I cut the pills in half & if it's not strong enough, I take another half.
i hope you are not cutting the oxycontin in half!!!
dont EVER cut an extended release medication in half. the ER medicines are meant to dissolve slowly and release a controlled amount of medication over a long period of time.
if you crush, chew, or break it in half, it can release the whole dose all at once and you can overdose!
are you sure its not oxycodone? those are not extended release, but oxycontin is. or maybe you are only cutting the vicodin in half?
these are the kind of things I learned by going to a pain clinic for my pain meds rather then just being handed a prescription.
i had a primary dr tell me to cut my toprol in half, but I knew better because it said extended release. sometimes doctors dont even know these things
Posts: 615 | From maryland | Registered: Oct 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
wow, thanks a lot. i had a doctor give me cholesterol meds and told me to cut it in half. then i looked it up and they said to swallow whole, not cut in half...
man, i can't believe we're at everyone's mercy...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Yes, having excruciating pain head to toe that I have had, no human could have lived through it without painkillers, but really they only take the edge off. I seriously thank God for them. I take one Oxy per day, Xanax to help w/nerve pain vico to help w/breakthrough pain. My husband is on Duragesic and klonopin.
My LLMD even said pain lowers immunity, a body fighting pain is not good and prolongs healing.
My PMMD (pain management md) totally agrees, there is no way to get well, when your body is busy fighting pain.
For more on pain & how it effects the immune system, you might want to read this. I was able to interview who they call the "Godfather" of pain management in California - he changed laws so that patients wouldn't have to live in pain and doctor's could prescribe w/o being disciplined. He was an amazing man who I am sure saved many lives by giving patients what they needed to relieve their pain: http://tinyurl.com/6oauhd
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
quote:Originally posted by Greatcod: I know a woman who has been on Fentenal (sp) patches for severe pain for years..it is an opiate. She has a teribble life, and has been largely bedbound for years. I hate Allen Steere, for what he's done to me and my friends, for the terrible lives we have because of his gross incompetence. Just thought I'd throw that in.
Were you his pateint at MGH or NEMC?
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Greatcod
Unregistered
posted
I've never seen the man. What happened in my life was that in 1986, I showed up sick at a doctor's office with two oval rashes on my chest. No central clearing. Lyme was diagnosed 10 years later. Steere's wrongful insistence on the Bullseye Rash and swollen knees as the presentation symptoms cost me my health for 21 years.
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posted
I take lots if pain meds and I am still in lots of pain. Sometimes I can't even think because of the pain. I take about 40 mg of Oxoy's a day plus my Lyrica of 300mg a day. Also suppose to be on anti-inflammatories. Also take mucscle relaxers. That with ABX and Supples sometimes I feel that all I do is take drugs.
-------------------- Theresa Posts: 16 | From Florida | Registered: Jun 2007
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posted
I tried ..'celebrex'.. but got poisoned- it ate holes in my intestines, causing even more pain than it fixed. I hear it's been taken off the market. I didn't want to take something that would increase the "brain fog", so I just went with the ibuprofen and willow bark. I found that 'nutrijoint' sulfate supplements actually seemed to help the pain, but maybe it was some of the abx kicking in, etc; also herx timing might be a factor. DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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posted
Yes, I was put on Methadone .5mg back in 05. My neck pain and headaches were so severe. However, I am sure that was due to the fact I was living with HIGH levels of mold in my apartment. Which I was unaware of at the time.
I just recently took myself off of it this Arpil. As it does NOT help my neck pain or headaches. It did help the muscle aches and pains, because I feel them a lot more than I had realized now.
If anyone has stomache issues such as IBS, Diverticulosis or sluggish bowels. I would strongly urge you NOT to take it.
Although it does seem to help with some issues, it is worse for you in the long run. It only masks symptoms which could be detrimental in your recovery. It also is attributed to moodiness. I was moody enough. LOL!
Not to mention the OCD. My Boyfriend just call me Monica (from Friend's). What a riot. Posts: 109 | From San Antonio,Tx | Registered: May 2008
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