posted
Hi, Bless your heart; you're going through so much right now!
To answer your question, I have never found anything either!!!! Especially when my skin is sooooo painful, there is nothing that works.
There was a med. that I was giving when getting out of the hospital that did help with the severe headaches and somewhat with the joint pain. I am so sorry as I can't remember the name of it!!! But, I will find it a.s.a.p. and let you know, okay.
It was actually a pill form of Dilated. I'm sure that's spelled wrong. But maybe you can ask Dr. R if she knows that name of it. They can inject it through your IV. But although it works faster that way, it wheres off too fast!! So try to get the pill form. It also helps with nausea!
I hope this helps a little! Hang in there.
Many prayers,
Janet
Posts: 351 | From Georgia | Registered: Feb 2008
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ByronSBell 2007
Unregistered
posted
quote:Originally posted by scared08: Hi, Bless your heart; you're going through so much right now!
To answer your question, I have never found anything either!!!! Especially when my skin is sooooo painful, there is nothing that works.
There was a med. that I was giving when getting out of the hospital that did help with the severe headaches and somewhat with the joint pain. I am so sorry as I can't remember the name of it!!! But, I will find it a.s.a.p. and let you know, okay.
It was actually a pill form of Dilated. I'm sure that's spelled wrong. But maybe you can ask Dr. R if she knows that name of it. They can inject it through your IV. But although it works faster that way, it wheres off too fast!! So try to get the pill form. It also helps with nausea!
I hope this helps a little! Hang in there.
Many prayers,
Janet
If it is diladid, I have had that and it gave me a sezure and put me in the hospital. Narcotics, opiates, and anything in or close to those family's just seem to make me more toxic and feel 10x's worse. I just can't figure out how to help my pain while I am going through this harsh treatment...
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IVIG has greatly helped my husband with his pain. It's difficult to get and is not a quick fix but it has been a big help in the constant muscle pain and muscle wasting my husband was suffering from.
Posts: 984 | From San Diego | Registered: Nov 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
byron-
have you tried patches?
sorry you are suffering so much friend.
im going to a pain clinic tomorrow because i too can no longer stand so much pain. i do have percoset which helps, i am sorry narcotics dont help you.
i know it seems out of line kind of, but marijuana might not be a bad idea to try. i knwo some lymies that onyl found relief thru it.
ill pray for your relief soon
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I am so sorry as I made a mistake!!!!! Diladid is what they gave me the first time I was in the hospital, not the second.
It was a combination of Demoral and Phenergan, and then they sent me home with the pill form. It is the only medicine that has been able to take the edge off of some of the pain from headaches and some joint pain. However, it still didn't work well for muscle and skin!!
I'm sorry as this is a narcatic. I wish I could help, as I know there is nothing more miserable!!!
Dr. R can't come up with anything to help you????
So sorry,
Janet
Posts: 351 | From Georgia | Registered: Feb 2008
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Dearest Byron,
Please give it time, you have been with your new LLMD and on IV AB's for such a short time - you know it can take many many months and for some years to see improvement - How long have you been on IV for now?
I think we have come to the conclusion that hardly anything out there can offer me any help. I'm just going to have to do treatment without pain help.
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3greatkids
Frequent Contributor (1K+ posts)
Member # 3838
posted
I am sorry you are in so much pain.
There is Tramadol.
Others here have used Lyrica. I believe this is a Fibro med and shingles? Some have said this med really helped them.
Pain for me w/ this journey was/is horrendous. As long as I was not in pain, I could face the battle.
No pain, more gain.
The patches for me were a blessing for the shoulder pain.
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
When I was on IV the 1st time around my pain was so bad I was in wrist splints and was in such pain in my shoulders and legs, in the worst effected areas I used a TENS machine that helped as I can not take any opiates as they make me puke and so ill - so tamadol etc was a no no for me but may be great for you.
Please speak to your LLMD to see if she can offer you pain relief as there are so many options.
I feel for you so much as you are such a fighter and I also know this phase will pass and you have to persist, So many of us are where you are right now, so know that at your toughest times we are here to support you.
I have severe pain in my face from cranial nerve involvement.
I can take Vicodin, but have to cut the pills in half and can only take it so often or I get sweaty and dizzy.
I have test results that show that I can't metabolize many drugs, which means that the side effects are worse for me than most people, also that they don't work.
I've never had Dilaudid so I don't know if it would help.
For four years I've been trying to get pain control. Pain is so hard to live with. Unless you experience it firsthand, you can't understand.
I was having pretty good luck with 300mg a day of Lyrica, but after six months I think it's stopped working. My doctor tried increasing my dose but it didn't help.
I think Lyrica would be worth a try for you, it's now pretty easy to get a doctor to prescribe it since it was approved for Fibromyalgia.
It didn't help with muscle or joint pain for me, but it did help with nerve pain.
I didn't gain any weight, which is one of its worst side effects, but I do get a little spaced out to the point that I don't trust myself driving.
It helps better than anything I've tried--prescription, OTC or herbal--for sleep.
Good luck to you and I trust that your treatment will make the pain go away.
Lynne
Posts: 353 | From Florida boonies | Registered: Nov 2005
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Byron,
Here are some of the things I've read are helpful for some folks with Lyme & coinfections who have whole body pain that is not responsive to routine pain medication:
acupuncture
Mucinex an over the counter remedy containing guaifenesin 600 mg I don't know why this works.
combinations of muscle relaxers and pain meds
lidocaine patches for specific chronic spots of pain
fentanyl patches....some use up to 200 mcg
extended release morphine tablets
fentanyl lollipops...Actiq 600-800 mcg generic is available, but tends to crumble hold in your mouth until the pain goes away takes about 15 minutes to work reuse the lollipop as needed causes dental problems due to sugar content
fentanyl lozenges...Fentora much less sweet and works faster than Actiq
IV lidocaine
methadone This medication may be effective in patients who haven't had relief from other narcotics
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
I have been taking combinations of several pain medications for quite a while to help me through treatment and even before treatment began, as I was in so much pain.
If you cannot take any Narcotics, your options really are limited. Tramadol was already mentioned, I believe. Some of the older anti-depressant medications are being used to treat pain in pain clinics now as well, like Elavil. People with Fibromyalgia type pain seem to respond the best to Elavil and similar type drugs.
There are also the anti-seizure drugs--Lyrica, Topamax, Neurontin, etc, that many pain doctors prescribe for pain management, usually more nerve pain/ neuropathic pain.
Methadone is a wonderful drug, it was the first drug I was put on. It is a good drug because you can start low, and increase very, very high---you can start with one pill a day and work up to taking 3 pills every 4 hours if needed, or more.
I have also tried The Fentanyl Patch, as well as Fentora (Fentanyl Buccal tabs), The oral buccal tabs work as an instant relief--however they only provide one-two hours of pain relief, so you must be taking a long-lasting pain relief drug along with it, such as Oxycodone, or Methadone.
A "good" combination (if you can tolerate narcotics) would be the Fentanyl patch 50mcg every 3 days, Oxycodone, and Fentora (2 pills/day AM/PM).
According to my pain doctor, the pain he has seen in Lyme patients is no joke----He has one young girl, only 19 or 20, she's incapacitated, lost the use of her legs, and she had to have an Inthrathecal Pump inserted by a neurosurgeon into her spine, to deliver IV pain meds round the clock, her pain is that severe.
So, take what you need to get through the pain, chances are your treatment will work better, you'll sleep better due to being in less pain (and the sedation from the meds) and you will recover faster.
Feel better!
Posts: 371 | From CT | Registered: Jun 2008
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
JKMM,
Does your pain specialist have a protocol he follows for Lyme pain?
I'd love to give our pain specialist some references; he isn't familiar with this type pain and is undertreating.
I think this pain can be equal to the pain experienced by patients with cancer.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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