posted
Can anyone relate their stories to me? Now , I have chronic pain 24/7 to the point in the morning I am unable yo get out of bed. A shower exhaustes me. Does anyone have experiences like this? Does anyone take meds for this? or have pain management? I am up out of bed about 8 hours a day on a strong day. Have had lyme for 3 tears, been in tx for about two years now.
Posts: 719 | From Delaware | Registered: Jan 2006
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
iceskater,
I've had pain ever since I was 14, of arrying degrees.
In some ways, I am so used to pain because I have had it so long. But the pain in 2002 did become extremely debilitating. It is worst in my upper back and referring into my hands.
It is crucial to treat the pain along with treating Lyme. If you want resources, go to the American Pain Foundation website http://www.painfoundation.org/
They have a new publication on treatment options.
I got my pain under control by working with a very good pain specialist. I was lucky in that the first specialist I saw was good. It tooked many, many months, but we eventually found a medicine combination to control my pain enough.
Once the meds started working, I had a huge benefit from physical therapy. For me it was myofascial trigger point release. Most of my pain comes from inflammed muscles.
The thing with pain is every person's pain is different. So pain treatment takes a lot of experimentation to find the right thing for you.
Some doctors refuse to prescribe narcotics. My view is that narcotics should not be the first line, but when other treatment doesn't work, the doctor should try narcotics. A doctor who refuses to ever prescribe them is not really serious about treating your pain.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Hi iceskater.
Just to give you an idea I am 19 yrs sick and 6 in treatment.
Pain was one of my first symptoms. I managed with it for the first 13 years... then bam...
more severe and it had spread to every joint except my jaw bone and spine. It also had spread to the bones and muscles in my arms and legs.
The only way I know how to explain the type of pain is sharp...like a sword through the joints and the bones and muscles being split and sliced open.
The only time I left the couch was to go to the bathroom and I had to hold onto the walls to get the short distance to the bathroom.
Everytime I ate I would keep dropping my fork. My fingers were crinkled, swollen and in so much pain I could hardly grip anything...
I couldnt even brush my hair.
So yes pain from lyme can be debilitating.
I got a pain dr... but I had to go through a few.
My expereince was that it was problematic finding a pain dr because
1. most dont believe in chronic lyme
2. most dont understand how painful and debilitating lyme pain can be
3. Because of 1 and 2 they see you as a drug addict.
My advice would be to ask the dr treating you for lyme if she knows any GOOD pain drs.
Also you could try contacting support groups to get a name of a good pain dr.
I used to be on some serious pain medicine.
Now with treatment I am not on any pain medicine and my pain level is very low.
My fingers even straighten.
Fortunately the pain has gotten better before some of my other symptoms.
I have been where you are now. Hang in there cuz it does get better.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I'll add, my pain doc was great at treating pain and believing my symptoms, but he did not believe I had Lyme.
He treated me pain as if it was fibromyalgia, which he diagnosed before I got the lyme diagnosis. But he picked treatment options based on symptoms.
It took swallowing my pride sometimes, but he knew what he was doing so I stayed with him until my pain was under control. I decided it was more important to get pain control than to convince him I have Lyme.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
Your response was right on the money. My daughter is having a hard time accepting that not everyone agrees with her Lyme diagnosis.
Her pain management doctor is treating the pain, not the disease. He is acting under the assumption that the pain is from Fibromyalgia, not Lyme Disease.
For me, as a father, I really don't care what his motives are as long as he treats the symptoms properly.
There is no doubt that our daughter is addicted to the narcotics that she has to take, but the alternative is worse.
We've been assured from not only her pain mgmt doctor, but from also from her LLMD, that the addiction can be handled once the Lyme caused pain is under control.
Iceskater,
Find a good pain management doctor. I know our LLMD could not afford to get in the middle of the narcotic controversy if he wants to continue treating Lyme properly.
The long term antibiotic treatment and the Chronic Lyme controversy is enough for him to handle.
Don't worry what your other doctors believe, as long as you are getting help with the symptoms of Lyme, what does it matter.
Good Luck
Posts: 681 | From California | Registered: Oct 2005
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
lymedad,
I think you mean your daughter is dependent on the narcotics, not addicted. They are two very different things.
Physical dependence occurs because the body adapts to the medication. The result is that a higher dose is needed for the same benefit.
People often confuse this with addiction. They think that because the patient needs more medication, or always takes the medication to not feel pain, that person is addicted. That's not the case.
Somebody addicted needs the narcotics because of the way it makes them feel, seperate from controlling the pain.
People in chronic pain are actually not likely to get addicted to narcotics if taken properly. We don't get high from the narcotics because we have pain that is being treated by the narcotics.
Addiction usually occurs when somebody misuses the narcotics, such as taking a medication when not in pain or longer than necessary following a short-term pain episode. Or, in the case of somebody who has a history of addiction, then it might occur with proper pain treatment.
If your daughter was addicted and the doctor knew, the doctor would not continue to prescribe the narcotics. It's probably a dependency, which is ok.
The downside of a dependency is that at a certain point, you can't increase the dose any higher for safety reasons.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic