quote:

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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

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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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Posted by Parisa (Member # 10526) on :
 
Byron,

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.
 

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Posted by djf2005 (Member # 11449) on :
 
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
 

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Posted by ByronSBell 2007 (Member # 11496) on :
 
maybe I will have to resort to the reef....



 

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Posted by Sparrow (Member # 11734) on :
 
My daughter uses duragisic patches and zanaflex. It has been the best combo for her.

Sometimes we use essential oils for neck or back pain. She likes marjoram oil the best.

Nothing takes it away,but theses are the things that help.
 

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Posted by DolphinLady (Member # 6275) on :
 
I know a couple of lymies that say the fentanyl patch has given them their life back.

Keep us posted.

Good luck to you.
 

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Posted by scared08 (Member # 14695) on :
 
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
 

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Posted by Rianna (Member # 11038) on :
 
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?

Rianna
 

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Posted by ByronSBell 2007 (Member # 11496) on :
 
starting 7th week of IV's Rianna...

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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Posted by 3greatkids (Member # 3838) on :
 
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.

Good luck.
 

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Posted by Rianna (Member # 11038) on :
 
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.

Hang in there

Rianna
 

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Posted by Nebula2005 (Member # 8244) on :
 
Byron

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
 

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Posted by hshbmom (Member # 9478) on :
 
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
 

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Posted by JKMMC09 (Member # 15795) on :
 

quote:

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Originally posted by hshbmom:
Hi Byron,


Here are some of the things I've read are helpful for some folks with Lyme & coinfections:


combinations of muscle relaxers and pain meds


fentanyl lozenges...name???
much less sweet and works faster than Actiq

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