I am wondering how much pain other's with TBD's experience.
I have been in treatment 2 years and reamed in pain almost the whole time...a good day here and there, but mostly pain, pain, pain, intolerable. I never drop below 6-7 on average (using scale below) and this month have been a solid 9-10 all month long.
My questions for you:
1). On an average day using the (ridiculous)pain scale of 1-10 what do you average? Here is the scale (From no pain to bed rest required): http://www.anes.ucla.edu/pain/FacesScale.jpg
AND
2). Do you hurt every single day or get days with no pain?
3). If you'd like - it would be interesting to know also your main pain issue and how long you have been in treatment?
4). Has anyone found any other reason besides TBD's for their pain, i.e., candida, heavy metals, molds, viruses, cortisone, etc.?
Thanks.
[ 28. June 2008, 09:36 PM: Message edited by: lymebytes ]
Posted by bettyg (Member # 6147) on :
My questions for you:
1). On an average day using the (ridiculous)pain scale of 1-10 what do you average? 10
2). Do you hurt every single day or get days with no pain? EVERY DAY!
3). If you'd like - it would be interesting to know also your main pain issue and how long you have been in treatment?
MAIN PAIN: NECK, R. SHOULDER BLAD AREA, LOWER BACK, LEFT THIGH/HIP AREA...THAT HIP WAS REPLACED 1 YR. AGO!
18 mo. pulsed abx: doxy and biaxin
6 mo. 22 supplements ... made me worse! fatigue!!
4). Has anyone found any other reason besides TBD's for their pain, i.e., candida, heavy metals, molds, viruses, cortisone, etc.?
NOT YET FOUND; went thru testings for molds, viruses, and metals! Bettyg
Posted by sparkle7 (Member # 10397) on :
I've been in non-stop pain for 10+ years.
I stopped analyzing it, maybe, about 1 or 2 years ago.
I get too depressed if I try to remember what life was like, prior.
It's much worse for me when I wake up. I don't know why this is & if anyone knows - please tell us!
After I'm awake for about an hour, it gets a bit better.
I also have absurdly excruciating menstrual cramps.
The pain is mostly in my lower back, shoulders, & neck.
I take oxycontin & vicodin every day.
If I don't take any pain meds, I notice that I get in a really bad mood & very exhausted. That's when I know I have to take something.
I try to bear it as much as possible without any meds but I just can't function after a while.
It really wears me down. I can't remember when it was under a 7 on a 1-10 scale for any length of time.
The meds make me feel better but it doesn't stop - I think my perception of it changes & that's why I can function.
It does change during the course of the day - AM (or when I can get out of bed after sleeping at night) is the worst.
Posted by groovy2 (Member # 6304) on :
Hi LB--
I have Lyme and Babs -18 yrs- for the last 10 yrs I was a 10 most of the time with days of 12s and 13s -
Felt like my whole body was a sharp tooth pain --was Horrible --
Thought about doing my self in daily --
Now 3 yrs into treatment I painted a desert Island Sun Set on the roof of my House today -
The Lady across the street is praying that I am a good artist -
It was Hot 99F today I had to go up and down the ladder 15 times caring paint and stuff -
I took my time and rested some -
the heat from the shingles ( 153 F ) Melted the glue of my sandles and they fell apart --LOL --
Lucky I was close to the Ladder- Seriously -
Have you Made Sure that you dont have ANY co infections ??? -
when not treated Co infection put you in put you in Holding pattern till you treat them also --
Mold can Also make you sicker - I live in Austin and its humid -
After visiting the Desert for 10 days I felt MUCH better -
So I ripped out the carpet in my house- and painted as much as I could and washed walls ect with bleach water -
Get A 3M # 92 dust mask and wear it - it will stop you from breathing mold spores - This mask will cost $5 worth every penny-
Hope this helps --Jay--
Posted by bejoy (Member # 11129) on :
I had very low cortisol and had to use Cortef to manage the inflammation. I made a big difference in my pain level. Brought a constant nine down to about a four or five. Have you had a saliva test?
Also, lymph dranage therapy made a big difference in pain reduction for me.
Posted by lymebytes (Member # 11830) on :
Wow, ok...so there are others like me.
I just think being in this much pain is so unusual for a lymie, I know there are some of us...but not as many as I thought.
BettyG - I had no idea you were in this much pain - so sorry to hear that.
Sparkle - you and I sound so much alike. Same meds and yes mine is worse in the morning always for about 3 hours after I get up. It is cortisol related I believe. I recently had my cortisol tested - although not out of range it is high in the morning and drops throughout the day, right along with my pain levels (IF I am lucky). They actually showed a sloping scale of my results..I told my LLMD you are looking at my pain scale. I also can get pain spikes (especially lately) around 5-7pm...not sure why. It takes such a strong person to do this. I hope you find relief (and me too!) because this is horrible.
Jay - You describe my pain well and emotions and thoughts too...I know the "off the charts" pain levels too...I don't understand it. Yes I do have one known co-infection I am having trouble getting at due to my sensitivities of the drugs needed to hit it. Did it help to rip out your carpet? That is so funny, because I know I have mold 'sensitivities' now - LLMD ran that HLA test - and I have wondered if our carpet could be moldy underneath, although nothing is showing through. My LLMd asked if I feel better away from our house - sometimes, not usually, not consistently anyway. We did mold plate testing and we have some "harmless" mold spores in our house - I put a mold plate outside for the heck of it and I couldn't believe the ugle spores that grew in that thing..outdoors looks much worse than indoors. It is hard for me to believe I have mold "sensitivities" before LD I never had a problem with them as far as I know. Jay so you are doing better and having less pain? Gotta know about the carpet - if it helped to remove it.
Bejoy - my LLMD did recommend low dose cortisone. But a cortisone shot is what rapidly disseminated LD through me, reactivated viruses...so I am afraid to try them. I have had my cortisol tested - through a spit test throughout the day. It was normal except right before bed, it dropped one point below normal..oddly that is when I feel my best. I don't get it.
Thanks for replies.
Posted by minimonkey (Member # 8693) on :
I've been in pretty constant pain for the last 20 years. I have days when the pain is a bit less severe, but more often than not, it's bad.
Treatment has helped some, but today, I'm nearly immobile. Almost all the lymies I know are pretty constantly in pain.
Posted by groovy2 (Member # 6304) on :
Hi LB--
Yes it Definatily helped ripping out the carpet-
I wanted to rip it out years ago but I was in no shape to do it -
Make Sure to get and wear the 3M #N92 dust mask- Mask is Very Lite blue in color-
I just looked online and did not find them-
The N95 mask May work as good but not sure-
I made the mistake of wearing cheap dust mask when first pulling out the carpet Made me Very sick for about 5 days- I learned my lesson -
With the Good mask I had No problem-and felt good after wearing it --
I found this site on Mold that might help you- --Jay---
I have pain every day for the past 4 years. since a severe acute infection that went ot my heart and i almost died.
it started with neck pain. nowe is everywhere.
I do have a back issue, and lately that pain is worse and not going away with pain meds (I am on morphine, lyrica, vicodin, and amrix)
I am going to get surgery on my back, because it shows on the x-ray the vertebrae has broken off at the pars on both sides and is slipping a grade 2 slip. I need fusion with a pedicle and screws.
i take so many pain meds that I am incoherent sometimes and just drift off and nod, and still in pain. I didn't think that was possible.
Posted by sparkle7 (Member # 10397) on :
Sorry to hear everyone's pain story. It's rough. I think the hardest thing for me is that it is unpredictable so it's really hard to make any plans - or get a regular job.
If I get a cold, migraine or menstrual cramps it's very incapacitating. It's like layers of an onion.
Lymebytes - Interesting about the cortisol. I'll look into it. I think it was included in my blood tests but I have to check it again. Sometimes, things can be "sub clinical" so they don't always show up in blood tests.
roro- is there any other therapy you can try for your spine. My boyfriend was in an accident & they said he had to get that fusion surgery but he didn't do it. He tried a therapy called Vax-D & it helped him.
I think they prescribe that surgery alot but I don't think it really helps everyone. You may want to check into it. There may be alternatives.
Posted by kelmo (Member # 8797) on :
My daughter has the same back/shoulder/neck pain that you all have. It's been a 10 lately. She holds herself to two vicodin a day.
She has a grandmother who is in chronic pain and is on megadoses of pain meds. She is a mess, and my daughter doesn't want to end up like her.
It's hard to watch your daughter in pain.
I'm sure the rest of my family is thinking this is payback for all the time I argued that our mother didn't need all that percocet.
I wish there was something to stop that pain. Doc doesn't address it accept to write an Rx.
Posted by lymebytes (Member # 11830) on :
Well it makes me wonder is it damage by Lyme or is the bacteria alive and well causing pain?
roro - My pain started and felt like an infection in my shoulder blade, with waves of what felt like hot wax...I saw so many Md's - finally the finale - cortisone shots into the shoulder blade and then my pain spread bodywide so fast doctor's thought I was crazy...of course.
Before the shots, I sat one day on my bed with the hideous shoulder blade pain, that now hurt into my chest, I looked at a bottle of Cipro I had in the house, I almost took it...but ultimately decdied not to and had the shots instead. I wish I could go back to that moment and decide to take the abx! They may have ended it! Who knows? Now I live with the "fallout"...and that is why I wonder, is this a damaged body or is it bacteria alive and well attacking every part of me?
Posted by ForestNymph (Member # 15109) on :
LymeBytes,
1) On an average day using the (ridiculous)pain scale of 1-10 what do you average?
9-10 on pain meds. 10+ ER pain without relief.
2). Do you hurt every single day or get days with no pain?
Every single day.
3). If you'd like - it would be interesting to know also your main pain issue and how long you have been in treatment?
The pain is everywhere from my head to my feet and is excruciating! The pain feels like that of an exposed nerve in a cracked tooth except it is everywhere! I would say the worst of the pain is in my knees which is both nerve pain and swelling.
Sometimes in the morning my knees feel like the joints are stuck and whether I try to move them or not it is the worst agony I have ever experienced. It feels like they are being torn to shreds.
4). Has anyone found any other reason besides TBD's for their pain, i.e., candida, heavy metals, molds, viruses, cortisone, etc.?
Not that I know of.
Posted by sparkle7 (Member # 10397) on :
I think you have to keep believing that you can heal yourself.
I'm not trying to minimize anyone's pain but the mind is powerful.
You have to keep the faith that you can get well.
Just my own personal philosophy....
Posted by Anneke (Member # 7939) on :
Hi there,
I'm so sorry to hear about your pain! I certainly know what it is like.
I tried MANY things in the past 6 years to help my chronic headaches and neck pain, and sometimes back. The pain is soooo maddening.
I was very very reticent to follow the advice of a terrific pain specialist because it involved an opiod. He educated me thoroughly about the safety of using a Fentanyl patch. It is actually much safer than many oral pain options like acetametofine sp? because they are hard on the liver, kidneys, and gut.
The pain patch releases very tiny doses in a steady stream.
There is a HUGE difference between being addicted vs. being dependant on a medication. I have never gotten what addicts call a rush or high from the patch. It just brings tremendous relief!
After I got on it, I really regretted that I had waited so long.
A good book to read is "The Truth about Chronic Pain"
The media has done a great job of demonizing treating chronic pain in the safe and effective option of opiod patches. For Those with true pain, who are monitored by good drs, taking an opiod patch can greatly improve the quality of their lives.
It's good to remember that chronic pain actually CAUSES brain damage. It's very critical to treat it as you would any other illness!!
Anneke
Posted by ElaineC (Member # 9857) on :
I have constant pain also, sometimes off the scale (especially at menstrual cycle) and sometimes at a level I can ignore for a while. But its so unpredictable and I'm just hoping that with more and more treatment it will disappear!
Posted by mojo (Member # 9309) on :
bumping for Lymebytes
Posted by MarlaSue (Member # 14601) on :
I have had severe upper back pain for 27 years, every moment of every day, attributed to fibromyalgia and many other things, just diagnosed this Jan as Lyme + coinfections.
Of all the things I tried to relieve the pain, the most effective were the antidepressant Celexa, which along with a few other antidepressants, acts on the pain center of your brain to reduce your body's perception of the pain. It lasted for about 5 or 6 months.
The second medication, which worked even better was Namenda, which is a relatively new med for Alzheimer's, but is used off-label for fibromyalgia. I felt so much better I was thrilled. It lasted for 4 or 5 months. My dr. described the mechanism of why it worked, but I can't remember.
Maybe one of the two would give you a reprieve for a while.
Marla
Posted by jjeennnniiee (Member # 7964) on :
Hi Lymebytes,
Fatigue used to be my #1 symptom, but it was soon replaced with pain, when I started treating my lyme and co-infections.
With that being said, here's my answers to your questions...
1. 10
2. Every single day
3. My main pain issue is simply I hurt all over, but especially my neck and back and even more so, if I do much of anything, which is the least physically demanding.
If I use them too much, which doesn't take much anymore, my hands, arms, legs, and feet hurt bad too.
I've been in treatment since Nov. '05, although I'm not treating as aggressively as I'd like, but only due to my personal circumstances.
That's, finally, about to change though and I'm so glad!
4. I have candida and several active viruses, have tested negative for heavy metals, although I have a hard time trusting the test, haven't been tested for mold, but I do have the HLA-DR4 genotype, which often goes along with it, and have had lots of cortisone in the past, but not since I've found out I have lyme, except for the 20/mg per day I need to take to supplement my adrenals, because I have adrenal insufficiency.
I'm not exactly sure how all of that affects my pain, but I'm sure some of it has something to do with it, although to what degree I don't know.
I must say, for a long time, I fought with myself about taking any meds for my pain, but when it got so bad I could hardly get out of bed, I realized I had no choice but to give in.
Recently, I finally got a scholarship to be able to afford to be a member of my local healthpark.
I'll be starting a therapeutic water aerobics class soon, which you even have to have a doctor's prescription for, thus I believe it's going to be a good one.
I'm hoping and praying I'll be able to attend regularly and over time, by doing so, it will reduce my pain.
As well, in turn, I'll be able to reduce the amount of pain meds I currently take and maybe even be so blessed to not have to take any at all anymore.
It really scares me to think I might have to resort to using a wheelchair someday, thus I'm trying really hard to stay out of one, as long as I possibly can (i.e. joining the class)!
Good thread idea and questions!
Hope my answers help you!
I like the replies also, as I was able to see how my pain compares to others who answered too!
Love, Light, & Health, Jennie
Posted by dg0207 (Member # 15623) on :
An infectious disease doctor in Fl recommended this so, I feel safe recommending it:
Pycnogenol.
For every pound you weigh, you take 1 milligram.
If you weigh 150#...you take 150mg...all at one time, once a day.
It must come from a reputable source and must be from FRENCH pine tree bark.
High doses of curcumin might help too. TONS of information on this on the internet as to HOW it works.
Gotta get the inflammation down. Some is good, too much is NOT.
Posted by randibear (Member # 11290) on :
i wake up in pain and go to bed in pain. sometimes it's a 10 plus ER type, sometimes i gets down to 3-4 but always pain...
i'll take alleve but so far not on any pain meds.
i can't tolerate them for some reason and i've tried many.
i've been in pain for probably about 15 years....
Posted by arc35476 (Member # 12786) on :
Yes I hurt every day averaging about a 5-7 for pain. Typically joint pain and muscle pain in shoulders, lower back, and hips. . . sometimes the knuckles of my hands.
I have been on abx treatment for Lyme since first of the year (minocyline), but I am also severely iron deficient and have thyroid disease and just had shoulder surgery in May.
I have wondered about junk food as the culprit, but one evening last week I noticed that I had no pain whatsoever . . I hurriedly ran to see what I had eaten that day and it had been Junk / fast food - so I am not sure about that part of the relationship. I am about to start a better diet to see if that helps. I also suffer from a LOT of fatigue.
I haven't started a lot of supplements yet because I am on so many meds for thyroid, iron, shoulder surgery, lyme - that I just don't think I could handle any more pills!
Posted by Bugg (Member # 8095) on :
I had CONSTANT pain (about an 8) for three and a half years....It was unreal....Eveyone would talk about herxing and I just always felt like I was in a CONSTANT herx....I kept treating for different TBIs and the pain never really dissipated....
Aside from treating for lyme and babs, the two things that helped the MOST with reducing my pain are:
1) Discovering I was hypothyroid and taking Armour and
2) Discovering that blood cultures for candida are positive in only 50% of patients with invasive candiasis.....Discovering that I really did have a candida issue.....Treating with Diflucan for an extensive period of time and altering my diet have really helped with the joint and muscle pain....It's still there but not nearly as horrible as it was for years....
Posted by Nessa1815 (Member # 15697) on :
1). On an average day using the (ridiculous)pain scale of 1-10 what do you average? I'd say an 8, 8.5.
AND
2). Do you hurt every single day or get days with no pain? I ALWAYS HURT. Once it set in, it has never left, not for 1 minute.
3). If you'd like - it would be interesting to know also your main pain issue and how long you have been in treatment? My main pain issue is my burning, tight, painful neck. Neuralgias. I'm on my 2nd round of Doxy (no LLMD yet) 400mg daily. The ONLY thing that gives me so much relief are unfortunately benzos. But I run out of those quicker than I should, so most days are miserable.
4). Has anyone found any other reason besides TBD's for their pain, i.e., candida, heavy metals, molds, viruses, cortisone, etc.? I haven't been tested for those....yet.
Posted by dg0207 (Member # 15623) on :
My recent pains I attribute to candida.
Recent labs show positive candida IGG & IGM. All TBD's came back negative this time.
Besides the thrush, I have many candida symptoms.
Diflucan, garlic and caprylic acid seem to have "herx" like affects in me