lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi, I see 2 LLMD's one who is more homeopathic than the other and he said something that seems very strange to me the other day. I have had very high pain levels since LD started, excruciating widespread neuropathy. He said that my high pain levels are not "normal" for tick borne illness and he doesn't see many with the pain I have experienced. He can't explain why I have tolerated so much pain. I have active viruses as well and am now wondering if the viruses are causing my high levels of pain.
I honestly haven't seen many posts of people complaining of high pain levels - do most of you NOT experience pain and just have brain fog, or muscle aches and fatigue?
I wanted to ask you, do you have no pain, mild, moderate or high levels of pain?
I will start....
Yes - high levels- 35+ pain symptoms - especially widespread neuropathy
Andie333
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Member # 7370
posted
yes -- at the worst of my illness, unbelievable burning, horrible tearing pain so bad it would bring me to tears.
Posts: 2549 | From never never land | Registered: May 2005
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cactus
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Member # 7347
posted
Yes - excruciating, off the chart pain!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Funny you mention viruses. I have pretty bad burning in my lower legs, and since a few days also in my inner thigh area
My LLMD suspects bartonella for which I am takinf Levaquin now. He says EBV can cause burning and that we might treat that in the future if the antibiotics don't solve the burning. My EBV IGG titer is rather high. Do you have EBV IGM positive?
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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posted
Yes.... especially during herxes! Excruciating pain in my spine and all over. My muscles hurt a lot too. [editing to add that this is past tense....I no longer have much pain!]
My LLMD says the pain of lyme can be WORSE than post-operative pain! There is an actual study which showed that to be true and I can attest to the validity of that!
Have you been checked for Babesia?? My babesia herxes produced my worst pain.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96205 | From Texas | Registered: Feb 2001
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lymebytes
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Member # 11830
posted
This is my group for sure so far!! Off the charts, crying, burning all of it! I have been in treatment over a year and although I do have runs of good days, I still have what I call "on the floor in agony" days.
Recent Igenex testing shows possibly I could have been re-infected too.
Yes I have EBV, but of more concern to my LLMD's is the HHV6 and CMV- I have high titers on all 3 plus LD and 2 co-infections (Babs was negative - but I wonder still). Also, I have been on anti-virals for months, they aren't helping (Valtrex).
One LLMD suggested I start Bicillin the other says it won't help and that the Amoxi I take with Biaxin is the SAME thing - I don't believe it really - any opinions there?
posted
pain, you betch; excruciating! i have frozen ice packson my R. shoulder/neck, and lower back all day while i'm up; change them every hr. for replacements.
bytes, i'm alot like you on your tests, but NO co-infections of normal stuff.
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posted
After 2 years of treatment, pain is my worst ongoing symptom. This after being about 60% improved overall.
I have pain in hands, wrists, ankles, feet, elbows daily. I also have moderate to severe pain in neck and shoulders leading to migraines about 10-15 days/week.
I take small amounts of pain meds most days still. Hope you can get yours under control. Cindy
-------------------- Cindy Posts: 227 | From VA | Registered: Sep 2005
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posted
what is ebv? Jenin
Posts: 455 | From Maryland | Registered: Jul 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I have severe constant pain. I gave birth naturally. I would rather do that 5 times in a row than deal with the pain of Lyme.
I consider myself to have a high pain tolerance. But Lyme has brought me to my knees.....
Posts: 3905 | From USA | Registered: May 2007
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Itsy_bitsyone
Unregistered
posted
I decided years ago that if one morning I woke without pain, it would simply mean I was dead.
I have a gripe, though. I go to the doctor's office and they ask me on a scale from 1-10, how do I feel today? (10 being the worst)
HELLO! My scale just isn't the same as other people's. I always tell them to "pick a number" for me. I was infected when I was 4. I'm in my mid 30's. When I was 8 I was hit by a car...rather badly and was all screwed up. I gave bith in my 20's. I broke my leg when I was 10. I have degenerative disc disease...PLUS lyme and the weird neuro stuff and severe headaches and so forth. I have neve know really what its like to NOT have pain for any period of time!!
So, if 1 is pain that I can get out of bed with and go about my day...and if 10 is so bad that I actually blocked the memory...I'm at a loss for what my day to day stuff would be for a normal person!!
posted
Yes , I have alot of pain . Some days more , some days less , but it seems like something is hurting most of the time .
the worst pain use to be my lower back and sciattica down my left leg , especially in my hip and groin , but since my first time that I was treated for lyme , it has not been too bad .
Now my worst pain comes from my neck ,at the base of my scull and usually leads to a terrible headache !
If I stay in a position where I am looking downward it will bring this neck pain on everytime (typing , chopping food ).
Oh yah , the muscle pains can be a real joy also .When they flare up , it doesn't matter what muscle , if I use it it burns !!!
Lately my r.knee , r.elbow , and r. pinky decided they didn't want to miss out on the fun , so they joined the party ! Posts: 97 | From West Chester ,Pa. | Registered: Aug 2006
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posted
Usually have pain; it's so constant that I usually don't remark about it. Am always managing it, whether elevating limbs or in the hot shower, or icing. I get constant chiropractic care. Before it was Lyme, it was just "fibromyalgia" to me. All fibromites have pain.
Posts: 13107 | From San Francisco | Registered: May 2006
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The fatigue and joint pain are the worst symptoms for me. Some days are worse than others.
My neck, knees, and elbows hurt the most, and sometimes the joint just seems to throb, especially my elbows. And it can feel like there's a little man in there trying to chisel his way out!
I also get random shooting pains that are real fun, too.
Someone else said it a few posts back, and I'm the same--I have had pain for so long now that I really don't know what it's like to not have it--OR to have energy. I remember always being more tired than everyone, even when I was a kid.
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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posted
Pain before Epidural Steroid Injection = 3 to 4. Pain after Epidural Steroid Injection = 8 to 9.
Posts: 175 | From Colorado | Registered: Feb 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Wow - ok, I think my LLMD is seeing the mild cases, because ALL of you have described my pain. Do any of you think that nuerotoxins are the reason??? Or do you think it is just this ugly disease and when it is under control the pain will subside?
I have said the same thing - I have given natural child birth, broken bones, herniated disks and NOTHING compares to Lyme. I thought I knew pain before, ha!ha! No way. It is impossible to explain this to anyone who hasn't lived it.
I wonder how many here had cortisteroid treatments before realizing it was LD - I did and it took a localized excruciating pain and spread it everywhere in my body. SouthernCo - I can absolutely relate.
I hope all of you find relief as well - I am so sorry so many experience this gawd-awful pain. Here is something that might interest you about pain, the immune system and pain medications: http://www.truthaboutlymedisease.com/forum/viewtopic.php?t=468
Take care.
( Jenin - EBV is Epstein Barr Virus - 99% of adults have it, but usually it is dormant. Viruses can re-activate with LD especially if you have had any cortisteroid treatments. Viruses can be dangerous(look at HIV - it is a virus that lead to Aids) CMV, HHV6 are viruses that can lead to lymphoma or leukemia in worst cases)
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
There are so many different types of pain that Lyme patients have, that the exact reasons probably vary too.
My pain is mostly muscle and soft tissue. It is excruciating at times, but much more easy to control than nerve pain.
I react very poorly to any trauma to the area. I just started acupuncture, and my muscles spasm terribly from it (I'm still giving it a few weeks to see if it gets better). I actually suspect the Lyme is in my muscles that are tight.
I do get some nerve pain. I get what I call a "line of pain." It goes up my right side, from the foot, up to my head, and down my arm. It hurts in various spots along that line. I've had that since infection.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Yes, very bad pain which started in non-joint areas (forearm and upper back), and moved to all tendons and joints. Only later to nerves, but the nerve pain is almost the worst now. I've been on pain meds constantly for almost five years.
btw, I HATE the stupid 10-point pain scale. My LLMD, any most other docs I see, ask me to fill it out every visit. After 6+ years in pain, what relevance does it have to me any more? 1-10 compared to what?? Is it as bad as the first day after my adult tonsilectomy? No. Compared to what I reported last month? Well, last month my elbows and wrists hurt really bad the day I came in, but today my nerves and hips do. Is it a 10 compared to being normal? I guess so, but I wouldn't know any more, would I?!?
(sorry, had to vent.)
Posts: 343 | From Northern VA | Registered: Oct 2004
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I hate the 10 point scale too - it shouldn't apply to us, it is absurd.
Look for an article in the October issue of Public health Alert I just wrote regarding pain and I happen to mention the ridiculous scale - there is no scale for this pain and when it comes to my nerve pain, it is just flat out everywhere. It can be "patchy" in places or it can consume my legs - nerve pain is the worst - of course I get all the other stuff joint pain, muscle pain etc., but I swear if the nerve pain went away I could deal way better with this.
Thanks for all your replies...makes me wonder why one of my LLMD's just seems that pain so severe is not that common...strange ..I just think he must be getting the easier cases.
Peace to all of you - may you find relief & complete healing soon, Dana
posted
I didn't know so much pain was possible before Lyme.
Lymetoo, my LLMD said something similar to me after I filled out a pain questionairre. It surprised me because I thought pain was pretty much the most prominent symptom of Lyme.
I don't think pain can be measured in any way other than in relation to that particular person's experiences.
Posts: 390 | From Oakland, CA | Registered: May 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
The other thing that I think someone may have already mentioned is that I think I have gotten used to some of the pain.
I dont think my pain is less, but maybe I tolerate it better. I only have been taking pain meds at night.
This disease sucks!
Posts: 3905 | From USA | Registered: May 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I started out with brief waxing and waning pain but ended up with
CHRONIC EXCRUCIATING ABSOLUTE AGONY 24 HOURS A DAY 7 DAYS A WEEK
and now NOW NOW
THANKS TO
ONE YEAR OF ORALS 9 MONTHS OF IV ROCPEHIN TWO YEARS OF MEPRON
I have
NO DAILY PAIN WHATSOEVER
NO PAIN NO PAIN NO PAIN
I have only a brief pre-menstrual flare in my left knee lasting 1-3 minutes A MONTH but the last 2 months I haven't had that, have had nothing nothing NOTHING
FOR OVER SIX YEARS
I HAVE NOT HAD THAT AGONY
THAT EXCRUCIATING CHRONIC HECK
It made it SO HARD to LIVE. Part of me was always GONE
GONE GONE
dealing with managing processing the pain so Iwas NEVER EVER fully present
part of me was ALWAYS WITH THE PAIN PROCESSING MANAGING DEALING WITH THE PAIN
Now I have the grace of being WHOLE again
not going
MY HEAD MY HEAD OH GOD IT HURTS MY ARM MY ARM OH GOD IT HURTS MY BODY MY WHOLE BODY OH GOD IT IS BAD
I would be howling inside sometimes
I stopped crying
But sometimes people would say, "Why are you crying?" and I would have tears running down my face that i did not even know were there.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
p.s. And I should add that in years of chronic agony I NEVER took pain medication because I am in recovery for alcoholism & addiction issues for 17 years now and I did not trust myself not to get lost. And because it was so much pain and frankly, I had already met so many Lymies in chronic agony who were ON pain meds, who were ON
unlimited morphine medical marijuana oxycodone
and they were STILL IN AGONY!!!!!!!!!!!!!!!!!!!!
So heck, I didn't want to get lost in pain meds because for me, I don't htink I would have followed the medical path to wellness with pain meds. That is ME.
I know someone in recovery for the same issues who got Lymed and who made a different choice and who stayed clean & sober despite use of all of the above- who went off w/o problem when medical use was done- and she was well-
I know someone else though, who took pain meds and went Out on them, who had Lyme, who ended up losing her job, thus losing her doctor, and who lost her house, and went untreated for Lyme, and ended up with cancer, and then died.
SO...
I believe I would be like her because I am SUCH an extremist and don't see myself going, "Well, that's ENOUGH morphine for today*)!!"
I am just not made that way- an all or nothing personality!!!
We are not all the same, even people with same issues, as I said, I know a woman sober years & years who got Lyme & used lots of pain meds but did it in a healthy way...
So I am not being judgmental re people in sobriety who use pain meds- for some it is the best option- for some- like me- worst option!
Take care all-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I just started acupuncture for my pain. I had my third session this morning. He had to take the needles out early because my muscles tightened around the needles. It became unbearably painful.
Lyme bodies are unlike other bodies. I can tell the acupuncturist isn't quite sure what to do with me. He just keeps saying my body is so sensitive.
On the pain scale, there is one very good use for it. If you ever need to get the attention of a health professional, tell them you are a 9 or 10 on the pain scale. You will get a response.
This happened to me when I had a severe spasm after a colonscopy. The nurse kept saying pain is normal. Finally, I told my mom to tell her I was a 9 on a pain scale. Within a minute she paged a doctor and was helping me onto a bed.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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luvs2ride
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Member # 8090
posted
Arniek
By any chance, are you left handed?
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
My right knee has hurt 1to10 sometimes 9 sometimes 5 and down.R ight Knee is the good one I blew out the other one years ago. I use to along time ago have terrible joint pain that migrated .
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
quote:Originally posted by luvs2ride: Arniek
By any chance, are you left handed?
Luvs
No
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Do you know of a good pain scale, or site that lists many different types of pain...or has descriptions of different kinds of pain?
That type thing would help us describe our pain in more detail.
1 to 10 isn't very useful...unless you list all your different kinds of pain and their locations.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I once went to the ER with excruciating all-body pain and I did scream from it.
The nurse told me to stop my behavior and that I was bothering other patients! When I told her I was in 10/10 pain she said, "I've seen 10 out of 10 pain before, and no one screams with it."
The doctor came into the room as well, and he told me if I didn't quiet down he would have me wheeled to the parking lot where I could scream all I wanted.
Nice, caring professionals, huh?
I wrote a letter to the president of the hospital and JCAHO because of my poor treatment.
The agonizing pain of Lyme is like nothing else. Perhaps she'd never seen anyone scream with 10/10 pain before because you're at 11/10 pain before the screaming begins!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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savebabe
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Member # 9847
posted
I have severe head pain. I mean the type of headaches that feel that someone is stabbing you in the eye and head over and over again.
I use to take multiple pain pills for all my symptoms, but after treatment I am down to controlling it with excederin.
Although during herxes, I keep my propoxy handy.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
I have at times taken as much oxycontin as a terminal cancer patient for the lyme pain. Then was better and was completely off them (with NO problems stopping it slowly btw. As my LLMD insisted I was never addicted, though my body did develop a dependence on the meds). Now on a couple short acting pills a day (partially because I can't afford oxycontin now since it went back on patent!)
Funny story though. I broke my shoulder last year and the orthopedic guy was going on about how fibro patients (a lot of times I just say I have fibro becaus I don't want to have to delve into the mysteries of having an actual bacterial infection)have a low pain threshold because their nerves are super sensitized all the time, yadda yadda. Anyway a couple months later I wound up unfortunately having to have root canals in 2 molars over Thanksgiving weekend, and spent the 5 days with exposed nerves in both teeth. When I got into the endontotist finally on Monday he looked at me and said, "my god how did you walk around with those nerves like that, what did you take?" My reply: "Well I took an 800 mg Advil the first day, but nothing the other days." At which point I realized the orthopedic guy was nuts, and I did have as high a pain tolerance still as I always have (I walked around for a week on a broken ankle once too). Lyme pain is NOT fun. The only pain I had that was as bad was from endometriosis, but I probably had a lyme infection at the same time.
-------------------- Valerie *********************************** "A woman is like a tea bag- you never know how strong she is until she gets in hot water." Eleanor Roosevelt Posts: 63 | From Jim Thorpe, PA | Registered: Aug 2007
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Cobweb
Unregistered
posted
I have wake me up at night even though I take sleep meds pain in my right leg.
I also hate the 1-10 pain scale. It's all so relative. After a while pain becomes a way of life.
Sometimes in public, especially, when I am with my daughters, I have to tell myself "now don't go acting like a decrepit old lady" as I look longingly at the whatchamacallit riding carts.
I'm afraid once I give into one, I'll never get out of it.
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posted
I don't think it's courageous in any way not to adequately treat one's pain. Would an orthopedic surgeon say "mm.. let's shoot for 40% recovery" There is NOTHING SHAMEFUL about needing pain meds to regain a good/great quality of life.
Getting on a Fentanyl patch two years ago made a big difference in the quality of my daily life - and it is SAFE. It is safer than using NSAIDS every day.
There is a difference between addiction and dependence. Patients who have serious pain issues do not get the high that addicts who use them without pain issues. I have used both Fentanyl and Vicodin, and I have never gotten a rush or high - I only get the benefit of pain relief. This is very typical.
Please feel free to write me privately if anyone is interested...
Posts: 364 | From California | Registered: Sep 2005
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posted
OMG yes. That was the first symptom - the horrible, full-body pain, then the migraines. But the full-body pain is the worst and without pain meds, I am bedridden.
Next would be the neuropathic pain, burning and stabbing.
Then I've got the arthritis pain in my knees and back. I have degerative disks, bulged disks and nerves being pressed. All the disks in my lumbar spine and most in my cervical spine are bulged. I have nerve impingement under my leg that causes so much pain that I can't sit in most chairs and I can't put weight on my leg a lot of the time (and it always feels asleep, especially when I sit).
Pain is the number one symptom. Then brain fog. Then fatigue. Then all of the very disturbing neurological symptoms. etc. etc.
Posts: 3 | From MI | Registered: Aug 2007
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posted
I should have added that before all this, I didn't take pain medication for anything. I had a disk replaced in my cervical spine and refused everything. I wasn't trying to be tough - I just didn't feel pain.
I've had broken bones, nerve compression, endometriosis, surgeries. I never took pain meds with these, not even the surgeries. I hated taking meds and I hated how they made me feel.
Now the meds just give me relief. I have no idea of the high that the abusers are referring to. I just have relief.
Posts: 3 | From MI | Registered: Aug 2007
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posted
I should have added that before all this, I didn't take pain medication for anything. I had a disk replaced in my cervical spine and refused everything. I wasn't trying to be tough - I just didn't feel pain.
I've had broken bones, nerve compression, endometriosis, surgeries. I never took pain meds with these, not even the surgeries. I hated taking meds and I hated how they made me feel.
Now the meds just give me relief. I have no idea of the high that the abusers are referring to. I just have relief.
Posts: 3 | From MI | Registered: Aug 2007
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posted
Honestly, my biggest problem is pain. I hurt so bad that all i can do is cry and pace around the house. it just makes you go crazy.
My mother who takes care of me can not even touch me because the pain is too much. I have been dealing with this for the past 12 years and no doctor would give me an answer or any help. It has ruined my life... Once, before my diaagnosis, I slipped and fractured and severelty sprained my ankle. The pain was nothing compared to the pain in the rest of my body that I am usually in. I kept walking on it, had no idaea i had fractured it untill the niext day, when it tripped in size, turned black and when I tried to walk on my body started shaking and I started sweating profusly. Still my body did not register any severe pain, because I was so use to worse pain.
And now that I have started treatment, It has gotten so much worse! lol. Its crazy, I did not think it could get worse. But now I know I am getting better, and that this is one day going to end! Its pretty exciting.
I am so sorry to hear you are in pain too. I hope your pain lessens soon! hang in there! We are all going to get better! Keep that in mind when you are in pain. I know it helps me to think of that.
posted
Personally, I think stoicism is highly overrated. I take my Vicodin when I need it.
Posts: 390 | From Oakland, CA | Registered: May 2007
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posted
Okay, lyme brain... I should have mentioned this above, but I have reduced my narcotics by 90% after adding Lamictal. It also completely straightened out my sleep cycles- I had turned into a vampire, which I think the 'cetes just loved. NO vit D!
Lamictal is an antiseizure med, also approved for bipolar disease- neither of which I have. But my very well known LLMD psychiatrist had me give it a whirl for depression. It helped that, but it was the pain that it made the most difference in. If you have neurogenic pain I highly, highly recommend discussing this med with your dr. It's made a huge change in my quality of life.
-------------------- Valerie *********************************** "A woman is like a tea bag- you never know how strong she is until she gets in hot water." Eleanor Roosevelt Posts: 63 | From Jim Thorpe, PA | Registered: Aug 2007
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it just makes you go crazy.
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I should have mentioned this above, but I have reduced my narcotics by 90% after adding Lamictal. It also completely straightened out my sleep cycles- I had turned into a vampire, which I think the 'cetes just loved. NO vit D! ![[Big Grin]](biggrin.gif)
But my very well known LLMD psychiatrist had me give it a whirl for depression. It helped that, but it was the pain that it made the most difference in. If you have neurogenic pain I highly, highly recommend discussing this med with your dr. It's made a huge change in my quality of life. 
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