Topic: Describe your weird migrating & neuro pain/does flu make pain even more strange?
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I have had pain to the extreme since being infected with major LD symptoms 2 years ago. I don't feel like I have gotten too far in treatment at all. I don't know about many of you, but my pain is so weird. Sometimes, there are no words to describe what I am feeling, do any of you have pain you couldn't describe?
Lately, I have had a pain increase, I don't believe this is herx pain, I may have a touch of the flu making things worse, since everyone around me has been sick - it is just hard to tell because I am "sick" all the time.
Here is my pain description - tell me if any of you have anything like this...
I have had this sporadic, like "firing off" pain all over, like shots of pain here, there, everywhere. It is sort of like going through 20 symptoms in 10 minutes.
My nerve pain is bizarre, I get hot wire feelings in my hands that last a few seconds then suddenly it will feel prickly in my legs, or next my lower eye lid flutters.
Then chest pain will come and go and muscle cramps and then gone. It is widespread from head to feet literally. The back of my head hurts, then stops,then I will suddenly have foot pain and its gone.
Does possible stomach type flu increase pain and make things even stranger?
I would LOVE to hear your descriptions of pain that you live with daily.
I sometimes think this is too severe to be TBD, it is so bizarre and drains me mentally.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It's probably the flu or a virus making things worse. When you're in pain all of the time it's hard to differentiate whether it's flu, Lyme or something else. I'm going through that, too. I feel like I have a touch of the flu or a cold. I have different pain symptoms, though. I just got over bad menstrual cramps besides everything else.
Does it every end???
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I hear ya Sparkle same here all the way, I too just got over that special week of pain, the son brings home cough,congestion etc., then husband brings home from his GP's office this gawd awful stomach bug that doesn't want to go away. If you ever find if it does end, please let me know!
posted
Feel like you've been plugged into an electrical socket? That's how my husband describes the pain. It used to be full body, but now after 8 mos of treatment, it's just in his feet. Feels like their burning, but they're cold all the time. How's THAT description for ya?
Everything flares when other things are going on.. Flu, colds, the cursed period....they all add inflammation to an already inflamed body.
He's taking Neurontin for the nerve pain which has been helping, but makes him sleepier than he'd like.
Looking at the time, I should take some Neurontin, I just can't sleep anymore.
One day at a time. Good Luck. Posts: 661 | From NY | Registered: May 2003
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
lymewarrior - 8 months and he is that much better? Please tell me his medications!
He describes it perfectly - I have to know what his abx are!
I am on Lyrica and others, nothing really touches this pain for me unfortunately.
posted
He was very ill at the start, couldn't move, and in pain.
Took Doryx (original form of doxycycline which is easier on the stomach) for about 4 mos. He got better right away, then towards the end of the 4th mo he got worse.
Switched to Biaxin/Plaquenil which made everything much much worse and he got really sick. He lasted for almost 3wks on that before he switched again.
He just finished 3 mos of Minocycline. He feels generally ok, and the pain is now limited to his feet.
He has not tried Lyrica (I did and it made me sleep all day, so he was reluctant to try it, but have heard it helps some people better than Neurontin)
It stinks that nothing is helping your pain. I have to say that the Neurontin only helps a little for him, takes it down a notch.
Now he's going off abx to see what happens.
Posts: 661 | From NY | Registered: May 2003
| IP: Logged |
quote:Originally posted by lymewarrior03: Feel like you've been plugged into an electrical socket? That's how my husband describes the pain. It used to be full body, but now after 8 mos of treatment, it's just in his feet. Feels like their burning, but they're cold all the time. How's THAT description for ya?
I have this in different forms and changing places (burning, prickling, electric shocks, stingins etc). Lyrica doesnt work.
Chest pains and muscle cramps etc I rarely have. Its mostly the nerve pain.
Havent had a flu for ages so cant really say about that one.
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
| IP: Logged |
posted
I have the same as Barton describes-its torture. Methyl B-12 injections appear to take the edge off.
Posts: 425 | From NY, United States | Registered: Mar 2005
| IP: Logged |
posted
Barton, My best long time friend was from Finland. She emmigrated to Canada with her to be Canadian husband, and I met her on a vacation in Massachusetts.
She told me stories of her childhood, how her family rinsed out their sheets by dragging them from a boat in a pond, such a beautiful image. Her father was a professional friend of Einstein.
Well, memories came flooding back when I saw you were from Finland. My friend passed away from old age some years ago.
I sympathize with the torture of nerve pain. Both my sister and my husband have this problem.
We will all keep posting, in hopes of finding a route to relief.
My sister uses hot hot electric pads. My husband uses ice packs.
Strange how everyone is so different.
Posts: 661 | From NY | Registered: May 2003
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
There have been points where all I had to to was be exposed to sickness (people just being sick around me with out me ever really catching it)
for it to tax my immune sytems and make my symtoms worse.
My current pains - I get shooting pains on top of my everpresent migrating ones. my joints are always hurting just not always the same ones. I can be limping on one leg entering and the other leaving. My musles still ache often..my head hurts part of every day lately..
the bottom of my feet. it feels like someone is slicing through my soles - always both ... this is usually bad at night ...the more i have been on my feet the worse it gets..most of the time shoes are evil and i only wear them if i must.
... and i have had a pricky tingle in certain parts mostly my face/head(like i have catus thorns rumbling under the skin.. and if i pushed on it i could feel the nerve kinda pulse sensation further up.
I have chest pain but i think that is inflamtion there not like the other nerve stuff for me. Most things for me stick around longer than what your describing.
I have had that eletrical shock feeling in my hands ...that did feel really weird
I know the pain sux i hope it starts getting better very soon.
quote:Originally posted by lymewarrior03: Barton, My best long time friend was from Finland. She emmigrated to Canada with her to be Canadian husband, and I met her on a vacation in Massachusetts.
She told me stories of her childhood, how her family rinsed out their sheets by dragging them from a boat in a pond, such a beautiful image. Her father was a professional friend of Einstein.
Btw, has anyone of you who have this nerve pain noticed if certain food makes it worse? I have noticed that eating eggs and onion make it worse and those are sulphury foods - and I know that people with chronic mercury poisoning have problems with sulphury foods... hmm?! Any amalgams in the mouth? I have and planning to get them out.
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
| IP: Logged |
posted
Yes, my neuro pain (tingling, electrical shocks, burning, stabbing) is MUCH MUCH worse when I pick up the flu. A few weeks ago I picked something up from work and the pain in my thighs and hands was so bad I wanted to jump out of the window and end it...but I knew it would be better soon.
I have personally given up completely on wheat/gluten food since I read an article by a famous neuro who thinks that everyone with neuro symptoms should give the gluten-free diet a try. My celiac test from metametrix came back "mild positive" as well.
It is just weird to me that all my other lyme symptoms have been taken care of by 6 months of abx, but the neuropathy has actually gotten worse. I am suspecting something else is going on, like an autoimmune response to something, mercury or metabolic problems.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
THANK YOU FOR MAKING ME FEEL SANE!!
Whenever I wonder if I am nuts, all I have to do is post something like this and people come together and their experiences are so similar...I am home for sure here.
A couple of comments: methylcobalamin injections are awesome, have done them 2 years (also a heavy metal detox I learned yesterday!!)
lymewarrior03 - Lyrica knocks me out too, so I don't take it as much as I should but it helps w/sleep. I have gone reverse from your husband Biaxin first, amoxi, bicillin (which really amped nerve pain) I tried recently to get on Doxy - I did a VERY low dose and I swear I didn't sleep, when I dozed off I had nightmares, pain, it was the wildest drug yet...scared me off. I need to go back likely with a "reaction" like this it was nailing something big time. Doxy scares me now! Was mino easier for your husband? The no sleep thing is the worst, we can't heal if we don't sleep, if I am going to be on Doxy, someone is going to have to knock me out! You sound like me with a whole family w/ lyme, husband, sister, niece, brother in law, even my son...but no one has had symptoms quite as severe as mine, husband runs a close second...cortisone did me in before I was aware I had LD. Is it true Doryx helps with less severe herxing? I need to get on Doxy...somehow. How long was your husband sick with LD before he started treatment?
posted
It's all so complicated and frustrating. Geeez, with all of our "electrical stuff" we should get home energy credits for fighting against global warming.
Lymebytes. we aren't sure if he had a relapse or worsening of the lyme he first got in 98 or if he got a new bite, or a new bite on top of a not entirely gone condition............ but he got very sick about 8 mos ago. No energy, couldn't p, nerve pain tingles everywhere.... He'd been feeling sort of sick for a while, sinus troubles....had a sinus operation, and woke up in disaster mode.
Even tho he'd been living with my disaster for going on 14yrs, he wouldn't believe that HE could be afflicted. He thought something happened to him during the operation. He took the wild goose chase route first, for 2 mos before landing at the LLMD's office. He never complains about anything, but said he was a 0 on a scale of 1-10.
He started with doxy, and began to get better within the week. He switched to doryx because doxy bothered his stomach so much.
He had aches and pains everywhere, chest, side... along with the neuropathy, which went from head to toe. Now it's in his feet and ankles, and otherwise he feels ok....besides being a little loopy from the neurontin. When he stops N, the pain gets more intense.
I don't believe that one abx or another is the magic bullet for any symptom. Everyone seems to react differently. He got really sick on Biaxin, and when he switched over to Mino began feeling better within a week.
Some people might say that since he got so sick on Biaxin, that it was the right drug for him... but some people have bad reactions to some drugs. It's not always "a herx" My husband never seemed to herx on the 2 drugs that brought him improvement. He just started feeling better.
Our doctor believes in taking breaks every 12 weeks from abx. He says that from his experience, nerve pain has a long memory and sometimes after you've killed the infection, the pain takes a while to go away.
If he begins to get worse during the break, he goes back on abx.
He has had terrible sleeping problems, but since taking Neurontin, and Ambien...he's out in 5 min.
Best of luck to you.
Posts: 661 | From NY | Registered: May 2003
| IP: Logged |
I had all my amalgams removed, before I was diagnosed with Lyme, when I didn't know WHAT was wrong.
I was happy to have the metallic taste out of my mouth. I didn't notice feeling any better, but I'm still happy they're gone.
If/when you have it done, make sure it's done correctly...with a dental dam, and suction, ... to make sure you don't absorb the mercury that is being removed. Sometimes the procedure is more damaging than having the fillings in, if done wrong.
Good Luck!
Posts: 661 | From NY | Registered: May 2003
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
OMG Lymewarrior - I swear just last night I was wondering if nerve pain has a "memory", how amazing you'd bring this up. You must see Dr. H or Dr. R? Both I know extremely intelligent, w/this disease I wish I lived back East.
Also - I agree in so many ways - so many say if it makes you feel horrible it is the right drug. But for me when Biaxin was added, I felt no herx, just improvement. My sister did Rifampin/Septra, no herx just improvement, yet a woman at the LLMD office commented, "then it wasn't working" I said, "Bull, if you were feeling better it was working!" She stopped and relapsed.
Similar stories. My husband though had back/knee surgeries and after all surgeries, still pain and weird nerve pain he was told was connected to his back surgery. Well it went on for years, then I blow like a grenade 2 years ago w/pain and neuropathy when all was said and done 6 people were diagnosed in my family with LD after my diagnosis, including my husband.
You are right...everyone is different and responds differently to medication and not everything is a herx. I know this, anytime I have added or switched abx and herxed too much in my opinion, I never felt better when the herx was over. So I don't even think herxing proves anything except we are causing inflammation and pain.
I like your LLMD's 12 week break idea as well.
Thanks for all response, much appreciated! Take care.
posted
I'm so sorry to know that so many in your family have been hit. It's so hard being sick. Well my husband has been off abx now for 3 days. Not getting worse, but I feel the worn out feeling he has from being in constant pain.
I hope for the day when a test is invented that tells us for SURE if we still have the bacteria or not.
And I am suspicious of all the hundred strains of lyme....I haven't heard anyone speak of treating a specific strain with a specific abx.
Good Luck
Posts: 661 | From NY | Registered: May 2003
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Barton , Yes, certain foods do make my nerve pain worse and especially some supplements. Can't eat anything w/wheat - have been tested and show no gluten intolerance.
Anything with garlic kills me....but it is a proven anti-everything, bacterial, viral, parasite...you name it.
I took a supplement the other day and out of nowhere sparking everywhere began, I looked at the ingredients...oregano oil and cats claw! It was a natural candida supp. no wonder.
I use to be way worse with many foods setting me off like fireworks, now it is basically wheat and garlic.
One other thing...I can't take warm baths, sets off nerve pain like crazy, showering doesn't bother me. Any kind of heat to my legs, gets nerve pain flying.
Lymewarrior You sound just like me and my husband. It has been a nightmare w/us both like this. Strange thing is when he complains of pain, my pain will increase. I told him he has stop telling me when he hurts. Drives me nuts to think we are both hit hard with this, I wonder if we will really ever both be well. It isn't easy. The rest of my family w/Lyme are doing MUCH better than us, in fact their "minor" symptoms I don't even want to hear, if you can relate.
posted
Ya, I can really relate. I think anxiety irritates the nerves making symptoms worse, since it's a neuro disease. My symptoms are different from my husband's, so we each have different complaints, but both get worse when stressed. His nerve pain gets a lot worse when he's stressed about me, or other things.
I know lots of people who either were cured by one course of abx, or have very minor aches and never took abx. But I also know people who can't get better.
Oh life is so random.
[ 19. February 2008, 02:41 PM: Message edited by: lymewarrior03 ]
Posts: 661 | From NY | Registered: May 2003
| 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!
![[Frown]](frown.gif)
![[Roll Eyes]](rolleyes.gif)
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[hi]](graemlins/hi.gif)
![[Big Grin]](biggrin.gif)
![[confused]](graemlins/confused.gif)
![[shake]](graemlins/shake.gif)
Printer-friendly view of this topic