Chronic Pain From Lymes Disease

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gamwce
Regular Member


Date Joined Dec 2008
Total Posts : 20
   Posted 1/6/2009 3:02 PM (GMT -7)   
I am looking for anyway to deal with the Chronic pain I have from lymes disease. I have chronic lymes its now in my spine and has taken the use of my right arm. The pain is so bad some days I just want to die. I am on some pretty great! pain meds but doesn't even mask it some days. My mom thinks I should try acupuncture.
 
 
Any suggestions????

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 1/6/2009 8:52 PM (GMT -7)   
Hi Gamwce and welcome to Healing Well. I wish I could tell you I know something about Lymes Disease, however, I do not know a thing about it. I have a sister in Florida that was dx'd with it and from what I understand she has lots of neurological porblems stemming from it. I do know you must seek care with a doctor that is very knowledgable in treating Lymes and not every dr out there has this knowledge.
 
She went thru many drs before finding one that knew about Lymes. I heard she just got back from being in Boston a week due to seeing a dr there for it. Haven't heard how that appt went yet. You said you have great pain medication but some times it just does no good. Are you under the care of a pain mgt dr? if not, you may want to get referred to one who can perhaps help you in the pain dept.
 
Not all pain meds are created equal and everyone tolerates medication in such different ways. What may help one person may do nothing for the next. Its really an individual disease.I do wish you luck in getting help. Ssie


gamwce
Regular Member


Date Joined Dec 2008
Total Posts : 20
   Posted 1/7/2009 8:29 AM (GMT -7)   
Hi...
Thank you for responding to me. I am under the care of a team of doctors now that I see a couple times a week. Family doctor who found it. Infectious disease Dr. and a Neurologist. I don't want to get addicted to these pain meds because there not really taking the pain away. Just making me not care I'm in pain. I would like to try and find a way to manage the pain without drugs. I knew of a pain management center In Baltimore but I think they closed down. I'm going to try and look online today for one in my area.
we have been told that I may have had this disease for as long as 2-3 years but because the spiral key is now in my spine that why I have gotten so chronic so fast. I go to the hospital everyday for treatments and there hope is to get ahead of the infection but they don't have high hopes for a cure for me at this time. That's why I turned to this web site to maybe talk to people with the same problems and find ways to deal with this in my own way.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 1/7/2009 3:24 PM (GMT -7)   
Hi again, yes I do remember her seeing an infectious disease dr as well. She was on IV antibiotics a long time and I think she does them on & off. I know she went to numerous drs and she is really into the naturalpath alot, but still see's both kinds of drs. From what little I know I just know it can be bad.
 
I wish I knew more about this dr in Baltimore that she went to but I haven't a clue. I think she was told so many things in the beginning it was so confusing. One said it was Lymes, one said it wasn't and it was a real back and forth thing for her. She is not being treated by a pain mgt dr, never has, she does not believe much in medicine.
 
For you, I mentioned the pain mgt dr since you said your pain was not under control. A good pain mgt dr can possibly help you get your pain under control without having the groggy feeling. Since this is their specialty they know more about pain medication than our average drs do. I can understand what you are saying about addiction, but addiction rarely happens, addiction is for the ones looking for the highs a medication can give, they don't need it for medical purposes, its a high they are after. In fact, highly reputable studies have proven we do not become addicts or addicted to our pain medication. Our bodies can build up a tolerance to a medication, which means a person may need their medication either increased or switched. But, this does not mean they are addicted. I take blood pressure medication and after being on it awhile it stops working, so we either increase the dose or switch me to something different. The point I am trying to make is this can happen with any kind of medication, its not limited to pain medication.
 
I am sorry you have such a dreadful disease but don't give up. I know somtimes easier said than done. I wish I could be of more help to you. All of us here can understand your pain, we live with it daily too. Perhaps you may decide to stay around there are many of us here in pain every single day, we know what its like. Good luck to you, Susie
 


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 1/8/2009 4:35 PM (GMT -7)   
gamwce
Have you posted in the Lyme Disease Forum? Many, many people have not gotten adequate treatment from an infectious disease doctor. They've had to turn to specialists that dedicate their practice to Lyme Disease.

I lost the use of my left arm on and off until I had aggresive and continued treatment with antibiotics.

gamwce
Regular Member


Date Joined Dec 2008
Total Posts : 20
   Posted 1/8/2009 5:05 PM (GMT -7)   
Yes I'm posted on the Lyme Forum as well. Not many responces with people with Chronic pain like me. Im now at stage 3 have had a spinal tap and went for a MRI today. I was told a few days ago its in my spine and The MRI today will confirm that its gone to my brain.
Im am relieved that they are treating more aggresive now. your right though because one doctor want to go 14 days with Rocephin and the nurologist changed it to go least 28 days. I am looking for an infectious disease Doctor. I had one 4 years ago but dont hold much faith in them because I was in there care and they over looked it over and over till i was releasted from there care I found a new Dr. who is trained and Cert. for lymes but not a Infectious Disease dr.  I test positive 3 out of the 4 blood panels first time out.
 
GAMWCE


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/8/2009 5:46 PM (GMT -7)   
Hi, Gamwce,
I want to apologize for not at least welcoming you to the chronic pain forum. I confess I know very little about lyme disease, and the pain it creates, but I am open to learning. I'm sure that it probably has resulted in many losses for you, as it does for anyone with chronic pain. So if you're willing to teach someone like me about the kind of pain you have, I'm willing to listen! But if you only want to hear from people with more info. on lyme pain that's ok, too.

Take care,
PaLady

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 1/8/2009 9:54 PM (GMT -7)   
Hi Gamwce,

I also wanted to take the time to welcome you to HW's Chronic Pain Board! I'm so sorry to hear about all the pain that you are in from Lyme Disease! I live in an area of the US where Lyme is very prevalent (to say the least), and in fact I have had it multiple times myself. However, I was lucky in that 2 out of the 3 times we caught it very early, and the other time we still caught it early enough that I responded well to antibiotics. I still get retested for Lyme all the time, as it theoretically could cause some of my chronic pain & I know that once you have it, you'll have it forever, although in most cases it lies dormant (although at this point, I've had so many tests done that it isn't really on the table as a cause any more). I know that this is somewhat off topic & I don't want to compare this to your situation, but one of my dogs has had chronic Lyme disease since she was about a year old & many vets, including several veterinary ophthalmologists told us that she was going to go blind (it mostly manifested in her eyes, although she has some severe joint problems from it as well). Doxycycline didn't work for her, nor other conventional treatments, so she now goes to a homeopathic vet, which has been a godsend. She'll be dealing with this for the rest of her life, but at least now, it is reasonably controlled.

I'm a big believer in alternative medicine & treatments, so I think acupuncture or another therapy might be worth a try for you. I go to acupuncture myself & it has definitely help me. Granted not everything works for everyone, but you don't have much to lose, and a lot to gain. As for what you have said about the pain meds not always helping. That's probably something you'll have to live with. I don't know of anyone here (or really any one at all) who's pain has been completely taken away by pain meds. But you can certainly work with your doctors to find a combination of medicines and therapies that work the best for you. Unfortunately, I've realized that it is somewhat of a trade off between what you have to give up and what you can gain. As Susie said, if you aren't seeing a pain management specialist, you may want to consider seeing one, as they can help you with both medication management, and injections, etc for pain relief.

I hope you get some good news from your MRI (although unfortunately, from what you wrote, it doesn't sound like it will be good shakehead). I am very sorry to hear of your situation. I know that Lyme can be a horrible, crippling disease & it saddens me to hear about your affliction with it. Keep posting & let us know how everything goes! If you stick around, you'll see that this is a wonderful place to come for great support and ideas!

Skeye

Post Edited (skeye) : 1/8/2009 9:57:26 PM (GMT-7)


gamwce
Regular Member


Date Joined Dec 2008
Total Posts : 20
   Posted 1/9/2009 7:52 AM (GMT -7)   
PaLady and Skeye,
Thank you for your well wishes. PaLady to answer your question about my pain. I don't know how to give a explanation of the level of pain and how its different then all the pain i have ever had in my life. It's a kind of pain that slows down your breathing and speeds up your BP. Crying? ha lol in to much pain to cry over it. I use to be a very happy perky girl. This disease and the pain is taking that from me. I'm very quite now and to myself now. I'm now out of work on medical leave and that depresses me. I can't take care of my family something as easy as cooking dinner or folding a load of laundry hasn't been done in months. I have an Awesome BF who is the BEST Husband I never had. He keeps telling me " it's my turn now. Just get better and let me take my turn" :-)
I hope you guys don't mind that I'm hanging out in the Chronic pain forum but that seems what is taking over my life is the Chronic pain.
Off to the hospital. I hope you all have a good and bless day.
 
 
GAMWCE


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/9/2009 10:53 AM (GMT -7)   
Gamwce,
I'm having a bad day myself, or I'd write more. But you're more than welcome here and it sounds like, sadly you fit right in. We always wish that no one else has chronic pain and has to be here, but if you have it there's no place better.

All these diseases are so life changing. Loss after loss after loss, right? I'd better stop before i go on my own rant, which I'll do elsewhere! But feel free to jump in on any thread. We have a couple wacky one going from time to time, and we always love a new person to jump in. I think right now the wacky ones have to do with insomnia and having so many doctors. Some of us need a little humor at times as it seems it's all we have. So don't feel you can't be part of the silliness if it appeals to you.

Please stay with us!

PaLady

gamwce
Regular Member


Date Joined Dec 2008
Total Posts : 20
   Posted 1/9/2009 11:22 AM (GMT -7)   
Palady
I'm sorry your having a bad day today. I was told in the lymes forums that the full moon we are going to get the weekend causes our pain to be even worse. Hang in there.
Soft Hugs :/
GAMWCE


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/9/2009 11:45 AM (GMT -7)   
Thanks, Gamwce! It really helps to have the support of people here!
Hugs back at ya!
PaLady
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