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Does anyone else hurt all day?

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Posted 6/15/2009 11:17 PM (GMT 0)
I hurt all day long. My muscles are always sore and hurt pretty bad. I feel like it sometimes hurts deeper, like in my bones. There's not one minute of the day that I don't hurt....well, except when I sleep I guess. But, sometimes I dream that I am hurting and when I finally wake up, I actually am hurting. This came on really sudden for me. I had alot of symptoms before and the fatigue was unbearable but I never had pain this bad until last August. I went through alot of stress last year and I think that is what started it up, but now it doesn't want to leave. I guess it is my new found friend now, LOL.

Anyone else hurt all the time like this?
Posted 6/15/2009 11:49 PM (GMT 0)
Yes I hurt all day too. I feel like my pain medicine doesnt work anymore until i didnt take it for a couple days then I realized how much it helped. I guess it is our new friend.
Started doxy today. Here I go.
Posted 6/16/2009 12:00 AM (GMT 0)
I have hurt everyday since October 2002. My best success was with Doxy and Rifampin (Taken at the same time).... I had a looooonnnnggg (10-11 days) herx and when it was over, I believed I was "cured", relapsed about 5 days later and by Oct. 2002... was sick again.

I don't know what you should do, other than keep a warm cozy comforter with you at all times (I always said if I get cured I'm going to supply FREE comforters to anyone with LD!). That was a very dark place for me... I held on to my comforter.

Finally, my pain mngmt. dr. rx'ed "Lyrica" for me. It takes away the "skin pain" , as I call it.

Hope this helps!
Posted 6/16/2009 12:01 AM (GMT 0)
Hi CG,
I hurt constantly as well - it's a real bummer on some days. Between my pain levels & the fatigue, some days can be a real struggle.
I've tried a few different pain meds, but none even touch the worst of the pain, down deep like bone pain - like you said.
about the only thing that touches the muscle pain is Vicoden, but I don't like to take it unless I can't move from the pain.
What have you tried? What has worked for you?
I use to use tramadol, but that's no good any more either.
I think your post was a really good idea!! A discussion on what to do for your pain may help a lot of people out!!
Thank you for starting this CG!!
Posted 6/16/2009 12:29 AM (GMT 0)
Veronica,

I know what you mean. I can definitely tell when I don't take my pain pills. I can tell right at the exact minute it is wearing off too. I take Ultram, 50mg 2x's a day but it never completely removes the pain. It does help though.

Btw, good luck with doxy!
Posted 6/16/2009 12:34 AM (GMT 0)
Jelaine,

I had a moment like that too with Amoxicillian. I herxed for over a month after I got off of it. I did notice no pain for about a week or longer. It was weird not hurting anymore. But, here I am again with pain again. I'm hoping Biaxin works like Amoxicillian did.

Ohhhhhh, I am always dragging my comforter everywhere I go....mostly on the couch. It gives me a calming feeling. Kinda like finally getting home from a lonnggggg trip, hehe.

Now if I could only get rid of these chills!
Posted 6/16/2009 12:39 AM (GMT 0)
Hey Traveler:)

You're very welcome. As you've noticed, I like asking questions. That's the only way I can learn.

I take Ultram. I am very sensitive to medication so I have to be very careful. I don't think I could handle anything stronger. A regular Tylenol knocks me out! The Ultram takes the edge off but if I wait too long to take the next dose, I suffer pretty bad until it takes effect. It's does help calm me down a whole lot too.

What do you take/do for pain?
Posted 6/16/2009 1:09 AM (GMT 0)
I would like to talk about pain management also. I am becoming tolerant to my hydrocodone. It is not doing what it used to for the pain.
-I tried Cymbalta last week and I ended up in the ER w a headache mixed into my body pain resulting in vomiting.
-I dont care what the catscan said and the MRI something is wrong w my brain the snapping clicking swooshing sound we have spoke of before.
-Tramadol does nothing for my pain I dont know why because I have spoken to people whom it helps very much, it does give me energy.
-I am going to make a pain clinic apt at my next neurologist apt.
I'm just at that point the pain causes anxiety you know.
- Do hot baths help you all it helps me very much.
Posted 6/16/2009 1:38 AM (GMT 0)
Veronica,

Hot baths help me as well. I posted a while back about a few things that help and Batherapy is one of them. I put it in my bath water and it helps with tired, sore muscles.

The Ultram just takes the edge off for me. I still hurt when I take it but not as bad. I can function when I take it. I'm so sensitive to medications and I don't think I could take anything stronger. I'd probably be knocked out for days.
Posted 6/16/2009 2:11 AM (GMT 0)
CajunGrl,

I'm sorry you are hurting.

I can always relate to so much of what you write in your posts.

I don't have much body pain right now but I did up until a few months ago. I only started to experience overall body pain a year or so after I ended up flat on my back with constant fatigue and flu-like symptoms. The doctors just added Fibro to my diagnosis of CFIDS but I always doubted that I actually had Fibro. At times the pain would get so bad and sometimes I couldn't figure out if the pain was in my muscles, nerves, bones or all three. I started treatment for LD in February and although it did get worse for a while I haven't had any joint or muscle pain anywhere other than my neck in a long time.

I just recently realized that I'm not even stiff when I get up in the morning. Now if only my neck and brain would improve. lol

Hang in there and know that even though it's getting worse it will get better.
Posted 6/16/2009 2:15 AM (GMT 0)
I have body pain that seems to come and go.

Some days are good and others are very bad.

I was dx with Fibro and possible CFS before I found out I had Lyme.

It seems like lately I have not only joint pain, but also connective tissue and muscular pain as well.

My pain seems to come and go in cycles. I did feel better for a couple of months after I had done about 8 months of combination abx's.

I am sorry that you are hurting as it really stinks. Especially when so many of us look good on the outside and the pain we feel on the inside tells a different story.

Hope you feel better.
Posted 6/16/2009 2:21 AM (GMT 0)
CajunGrl, I forgot to mention that the body pain also started for me around the time I was under a tremendous amount of stress and already on disability.

I hope it doesn't last too long for you.

It's very strange how we all react or don't react to pain meds. I tried so many different prescriptions and nothing helped at all until I tried Endocet/Percocet. It was the one and only thing that took the pain away but I think I'm also building a tolerance to it. When it doesn't do the trick I pop two Aleve. There's probably a reason why I shouldn't do this but I'm so tired of hurting. It seems as if the neck pain is actually getting worse.
Posted 6/16/2009 2:42 AM (GMT 0)
Yeah in my mind i always ascociate cajun and scorpio together for some reason
Posted 6/16/2009 2:59 AM (GMT 0)
Scorpio,

Awwww, you're so sweet. I wish I had a friend here that had your heart.

Sometimes, I hurt so bad all I can do is cry. My husband tells me to stop getting myself upset because it will only get worse but I feel like it releases something inside and actually makes the pain better.

Im hoping the Biaxin works like the Amoxicillian did and stops the pain. I've got to take everything slow though and still haven't started back on the Biaxin yet. I guess we will see.

Btw, I have the stiff neck too. I was put in the hospital with a stiff neck and flu-like symptoms because the doctor thought I had meningitis. My neck is stiff everyday. Actually, my whole body is stiff everyday, especially when I wake up in the morning. Sometimes I can barely bend my fingers.
Posted 6/16/2009 3:03 AM (GMT 0)
Lies,

I was diagnosed with Fibro and CFS too until my LLMD did that pressure point test and I didn't hurt in any of the places he pressed on. Then I later found out that I really had Lyme. My doctor said that most of the patients he sees with Fibro have an underlying illness and alot of them have Lyme.
Posted 6/16/2009 3:04 AM (GMT 0)
LOL veronica:)
Posted 6/16/2009 3:46 AM (GMT 0)
Cajungrl,

That is the same thing my doctor told me. He said that so many of his patients that have gone to rheumy's and have been dx'd with CFS and FM many times will go on to found out the underlying cause is something like Lyme or some other disease.

I am so happy that I found out that I have Lyme(not happy that I have Lyme, but happy that I know what is causing all the symptoms).

Now, if I can just get rid of it.
Posted 6/16/2009 5:44 AM (GMT 0)
Lies,

I'm happy I finally found out too. I suffered for almost 6 years. I'm not sure how much longer I could have taken.

Are you on treatment now?
Posted 6/16/2009 4:56 PM (GMT 0)

CajunGrl said...
Hey Traveler:)

You're very welcome. As you've noticed, I like asking questions. That's the only way I can learn.

I take Ultram. I am very sensitive to medication so I have to be very careful. I don't think I could handle anything stronger. A regular Tylenol knocks me out! The Ultram takes the edge off but if I wait too long to take the next dose, I suffer pretty bad until it takes effect. It's does help calm me down a whole lot too.

What do you take/do for pain?

Hey CG,
I've already built as resistance to a lot of 'lesser' pain meds - although I can still take Aleve (2 @ a time of course!) for the generalized low-grade pain. =)

about all I can do right at the moment is take some vicoden & pray once the "real" pain starts. I am very concerned about getting into the stronger pain meds.

I may have a long time yet to live & I know I will be desperate for pain relief later on as well.

We don't have a tub - only a shower- so no soaking in that nice, warm water for me.

I tried to go through warm water rehab, but after about 2 1/2 weeks, I over-loaded on stress, so I never completed it.

It actually helped me to feel better - other than the lovely extreme exhaustion. Now, I MUST do whatever I can that helps even a little bit! Ice packs, heating pads, & whatever else I can find!!!
I do a lot of sitting on the couch (surrounded by 3 dogs!!) crying, not moving unless I must(!) as well. Fortunately my hubby does understand that I have those days.


Any one tried both Lyrica & Cymbalta? If so, what kinds of differences did you experience? Also, has any one tried the newest one (Savella)?

Having lived with this 'stuff' for most of my life (infected with LD & STARI @ the ripe old age of about 5 or 7), I am soooo tired of the pain & over-whelming fatigue!!

BTW, as for the FM - I have 18 out of 18 trigger points reacting strongly!!
Posted 6/16/2009 7:04 PM (GMT 0)
I had incredibly intolerable pain in almost my entire body including muscles, bones, spinal cord, head, eyes when I started on new meds for babesia.  Way too many toxins from the killing spree, plus side affects from the meds no doubt.  No pain killer drugs worked.   I had to stop all my meds that kill things, then add them back slowly while taking natural pain relievers all day long and doing infrared saunas and mineral baths, to keep pain levels tolerable.  The nnatural pain relievers that work for me is Wobenzym on an empty stomach and Kaprex (Metagenics) with meals.  Also I take things to help my body deal with toxins better, like lyposomal glutathione and other antioxidants, angstrom minerals, and liver support herbs in products like LIV 52.

I think pain is the way our bodies are telling us they need help, with lyme especially they need help detoxifying those evil lyme toxins.

Posted 6/16/2009 7:06 PM (GMT 0)
Cajun Girl,

yes I am in treatment. I have been in treatment since May 2008. It has been up and down, but I did have a couple of incredible months in the winter. I have back slided a little and am hopeful to make progress again in the future.

I have done different combo treatments. amox w/ zith
Flagyl
Amox, probnecid and Zith
Doxy w/ Zith
Ceftin w/ Zith(my LLMD really likes Zith when used in
combination form)
I take multiple supplements and probiotics too.

My symptoms started worsening after I took a 6 wk break from the abx.

I was bitten by a tick in 1992.

Tried to find out what I had from 2005 through April, of 2008
Been in treatment since May 2008
I will get well somehow, some way!!!!

Thanks for asking about me.
Posted 6/17/2009 4:18 AM (GMT 0)
there is a second of the day or night i dont hurt. i was taking celebrex and pain meds along with gapabention, not 1 of the 3 stoped it, but they bring it to a dull ror somewhat. i took my last celerbex on saterday and my pain jumped 10fold from the lil twitches to the born jaring kind. i also have arthiris of some sort, its anyones guess what kind tho. every test for RA comes back normal. last Dr. said fibro. so who knows. me and pain have been long time firends
Posted 6/17/2009 4:22 AM (GMT 0)
I was wondering where you were RD what have u been doing are u ok.
Posted 6/17/2009 4:43 AM (GMT 0)
Traveler,

I'm so sorry you have suffered with this disease for so long. It can be very debilitating at times especially with the pain and extreme fatigue combined. I don't know which one is worse. I think if I didn't have the fatigue, I could deal with it better. I would just pop a pain pill andwould be able to maybe get out of this house.

I wish I could take aleve or even advil. I've suffered with stomach ulcers for years. It's always something. I do take a supplement though that has the effect that advil gives you for pain. It works pretty good but it still upsets my stomach if I take it too much so I'm stuck with a pain med that just basically takes the edge off. Oh well, I guess that's good for now.
Posted 6/17/2009 4:48 AM (GMT 0)
Sher,

I had to do the same thing recently with my meds. I was already on a lower dose than normal because I'm so sensitive but I still had a bad herx....the very first day. So now, I will be adding one med at a time and work up very slowly. I'm waiting for my husband to come back from his hunting trip, then I will start again.

I'm glad you found something natural that worked. I was on something natural for pain but it stopped working and I was taking way too much so decided to get a prescription.
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