Was wondering if all of you have a lot of pain. I do not have any pain at the moment...my symptoms are more neurological...weakness in legs, muscle twitching...dizzyness etc.. I am on the path of being dx for lymes because everything else seems to have been ruled out.
Is it strange if i do have lyme that i have no pain?
Thanks,
Lesley
Posted by AP (Member # 8430) on :
I didn't have a ton of pain before I was diagnosed... Only a severe headache, as far as pain goes.
As the disease has progressed, my joints have gotten a lot more stiff, and muscles more tender. I just realized yesterday that I can't even hop on one foot anymore. I'm 23 for crying out loud.
Posted by shazdancer (Member # 1436) on :
My son has no pain -- all his symptoms are cognitive/psychological.
Posted by humanbeing (Member # 8572) on :
pain comes from the reaction of our immune system to the infection.
my lld said if you gave a lyme patient a steriod (which you would never do) they would feel like a million bucks.--but the infection would take over.
A sensitive immune system/reaction spells mmore severe pain.
Posted by my2haveit (Member # 7712) on :
My daughter has had no pain in the 7 years of active disease.
Her main symptoms are pyschological disorders, skin lesions, sleep disorders, diminished function in her hands, and very, very extreme fatigue.
Sue G.
Posted by hopeful123 (Member # 3244) on :
like much of lyme itself, it varies within the person. sometimes i got it. sometimes i don't.
more cognitive and exhaustian than pain, but sometimes pain.
Posted by Linda LD (Member # 6663) on :
I don't have pain.
A sleep test showed I have the "mental capacity" to push the pain away during the day. At night the pain is so bad I wasn't getting any REM sleep--pain was waking me up hundreds of times a night and I didn't realize it.
I can actually wake up--be in pain--and then I just lay there and "push" it away.
My sister had a hysterectomy and she was taking codine and it wasn't helping with the pain at all. The doc told her, it sounds like your pain receptors are already full...isn't that wild?
The human mind is an awsome thing--we weren't allowed to be sick when we were little--so we learned to ignore pain. If we had Lyme disease even then it "felt" normal to us. It has proven to be a very bad thing--you get a really bad infection--and you have no idea...
Linda
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lesley:
Is it strange if i do have lyme that i have no pain?
It happens. Consider yourself very lucky. Research has shown that the pain of Lyme disease can be worse than post-surgical pain. I can attest to that fact!
Posted by vitch (Member # 8094) on :
Years ago, I was in agony but I haven't had serious (TG) pain in many years.
Posted by Andie333 (Member # 7370) on :
Hi, Lesley,
Prior to starting abx, I had a lot of physical pain, especially in my right knee.
I had severe Lyme arthritis in that knee, and the pain was searing and burning, to the point of being debilitating. The reknown sports duck shot me full of cortisone twice, before I knew better.
Once I began taking antibiotics, the symptoms shifted dramatically to neurological things. But I still get that burning pain in my knee. I now think that's more neurological than physiological.
It is definitely nasty. Plus, there are times other arthritis symptoms flare (all Lyme related) in my hips and hands. Again, this is nasty, as is the headache I've been getting n the past few months.
Just started treatment for Bart, so a lot of these symptoms are kicking up.
Andie
Posted by minimonkey (Member # 8693) on :
I agree -- be grateful for not having pain. My pain is awful and unremitting -- really disabling at times. I, however, am grateful not to have the cognitive symptoms, at least for now (I did have them years ago) -- if I had to make the choice, I think I'd rather be in pain than unable to think....
Posted by Kentucky Girl (Member # 8587) on :
I have alot of pain, but then again, I was treated with steroids for a long time.
Lyme has definately had a big party in my body and left me with a major hangover to clean up.
Lets hope you can get through this without a lot of pain!
Posted by firecop1066 (Member # 6920) on :
hi Lesley, Other then debilitating back pain ALL of my symptoms were neurological:
Slurred speech blurred vision numbness hands, feet, head, face sleep disturbances cognitive difficulities (BIG UNDERSTATEMENT) weakness in legs I even drooled (such a pretty picture)
So No in answer to you question i dont think pain has to be a major factor in lyme (or if your undiagnosed for a long time...maybe you used to have pain, it has subsided its kinda forgotten, and the Nuero symptoms are your current and awful symptoms so they are what you think about now....does that make sense? Jill
How on earth could i forget FATIGUE!
Posted by BostonLyme2005 (Member # 7680) on :
Hi,
I have lots of pain sinse being on tetracycline. Oh I had pain the times I was not on meds, but nothing beats the tetra herxes, NOTHING!
Posted by lymedad (Member # 8074) on :
Lesley,
Our daughter has been diagnosed as having Lyme in addition to 2 co-infections, bartonella and babesia.
Not only does she suffer from the neuro-symptoms, brain-fog, slurred speech, etc., she stays in constant pain.
The pain presents itself mainly in all of her joints and she says her bones hurt all of the time.
In addition to the body pains, she also has severe migraines, usually on the order of three to four days of the week.
She takes a load of medications, Vicodin, anti-seizure, antidepressant, etc, yet nothing seems to really control the pain.
She's now in a wheelchair when she feels like getting out of the house because of the joint pains in her knees and ankles.
Posted by firecop1066 (Member # 6920) on :
lymedad, I am curious, as i too have suffered from slurred speech for 2 years now, has your LLMD stated what he may think causes this? Lyme or one of the co-infections? I have seen my greatest improvement on Rocephin and flagyl (flagyl just recently) however its still here...
I was just wonderingif you have pin pointed the main culprit in this symptom...(most of my symptoms have been neuro...with a bit of pain here and there...that has cleared dramatically with 10 months of IV rocephin and biaxin but some neuros still hanging on....thanks...Jill
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by BostonLyme2005: but nothing beats the tetra herxes, NOTHING!