I am just wondering if anyone has had their pain go away and stay away. It if the most difficult of all the symptoms...daily aching and pain. I am not as tired as before, but definitely in pain.
When I first go sick...I had the flu symptoms, than started taking abx and wow....pain in my back, knees, feet, hands, etc. Than my joints started to crack. They have stopped cracking somewhat, but still really hurt. I am going to be going IV meds in the month and hopefully will start to go up the health ladder again.. So, has any one gotten rid of the pain and just small symptoms now.
Thanks Janjan Posts: 30 | From warrenton, virginia | Registered: Nov 2005
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bettyg
Unregistered
posted
My 24/7 pain is not any better! Have more in new places since taking abx.
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I was switched to 750 mg Flagyl 10 days ago.
After a week I had a whole night of pain free right thigh (for the first time in about a year and a half). It lasted all night.
Then yesterday I thought something was different. I was totally without pain -- anywhere -- for an hour.
This is how I think it happens a lot of the time. Then the minutes add up into days, weeks, months, years.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
No answers here, but I have the same kind of pain you have -- it is awful, and I'm sorry to hear you are hurting!!! Mine has gotten worse since starting abx... but I knew that would happen. I am holding on to the faith that it will eventually start to get better...
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All-- You can get to where you are pain free- many have --Including me--
It takes- time- knowlage and some luck--
It is a tuff road but you dont have much of a choice --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
Thanks everyone. I am definitely going to keep my chin up and pray for the pain to go away. I am glad to hear that some have had it go away. I am looking forward to that day. I pray that for everyone that has lyme.
Thanks,
Janjan
Posts: 30 | From warrenton, virginia | Registered: Nov 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Eventually Jan, the pain subsides as treatment goes on. Try hot bath's in epsom salts, they help many.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
I probably have the pains you have, but the doctor said that I have hypochodriasis. Should I believe him, otherwise how to deal with him?
Posts: 77 | From USA | Registered: Feb 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Fire him.
Your pain is to be taken seriously.
Far too many are suffering chronic pain and told they are hypochondriacs.
Particularly women. Particularly with Lyme. But with other illnesses too.
Get a Lyme Literate doc--LLMD or get a good doc, one willing to LISTEN and be considerate.
I am sorry your doc is a jerk.
Again, fire em.
Dont waste your time or money trying to change their mind. Go get a diagnosis or get into whatever treatment DOES help your pain (I am unclear if you actually have lyme or not) and then sit down in a year and write your heart out to this doc.
Otherwise your wasting your time and your money and you are feeling badly about feeling badly.
ALso to the topic: I sometimes read the success stories posted in Tree's newbie links. But soemtimes they piss me off. Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
after 3 years of abx I can say YES! the pain does go away. I still occasionally get pain in my legs or shoulders or arms & hands...but it's NOT every day!
My first year was pretty painful. It really is just in the last year that I have noticed that it goes away for longer periods of time.
I still sometimes do things that aggrivate it (bowling...) but for the most part it's 90% better
[QUOTE]Originally posted by Naomi: [QB] after 3 years of abx I can say YES! the pain does go away. I still occasionally get pain in my legs or shoulders or arms & hands...but it's NOT every day!
You've been on abx for 3 years and I have a question about that: Have you been on abx constantly without stopping or do you take some breaks every now and then?? If so, for how long & why?
Secondly, are you on the same abx for 3 years or do you alternate them periodically? If so, how often and which?
After being on abx for 3 years, are you saying that you are not fully recovered yet? How long have you had this LD? Are you still taking abx now?
I am asking you all this cuz I am trying to get a better perspective of the treatment course, so that I have a better idea of what to expect and how long it takes.
Thanks!
Posts: 90 | From Maryland | Registered: Jan 2006
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posted
Hi Moose I have been on abx fairly consistant for 3 years, but there have been some breaks in there. Just this last summer I went off all meds for about 2 months.
Mostly the reason I have had breaks is because my first llmd quit his practice to go into research. He left me with enough Zithromax to last for awhile, but it took me a good year to find an llmd that I was compatable with. There are lots of quacks out there!!
Zithromax has been my main medication. I also took Tinidazole for about six months...I couldn't tolerate Flagyl so that was the alternative. I have a chemical sensitivity so we have tried lots of different abx but I couldn't tolerate most of them (seriously exaggerated side effects).
During the summer of 2004 I took Rocephin shots (1 gram 4x a week) for about 3 months. Right at that point my llmd quit so we went off Rocephin and stayed on the zithromax.
I am not fully recovered yet but I can honestly say that I am about %80 of where I was! For the next six months I will stay on Rocephin and Zithromax (have been taking Rocephin since October after FINALLY finding another llmd) because I am pregnant right now (NOT planned).
I think treatment is different for every person. Personally I have had the most success with Rocephin and Zithromax...but I know it's not what everyone uses. From what I understand my llmd (who actually has Lyme himself) will treat me until I go two months with NO symptoms.
But he also really believes that I need to have a say in my treatment....so if something is not working for me we discuss it and figure out where to go from there.
I hope all of that helps you some. Don't give up hope! I firmly believe that hope is so very important to healing. I refuse to be sick for the rest of my life Let me know if I can help with anything else! Naomi
ps. I must be having a very LYME day...I have had to edit this 3 times!!!
posted
YES, I was almost pain free shortly after taking herbs and before taking any abx for this Lyme.
However the past two months have NOT been good. But now that the quit the abx for good, (I hope), the pain is considerably better and hopefully in the next few days, will get back to where I was before the abx.
I personally like the alternatives to the synthetic pharmaceuticals. You feel so much more ALIVE!
posted
I have pain everyday....I hate the fatigue! I am seeing my LLMD next week, will be changing from Tetra., to something else, only 3 1/2 months into recovery...
There is sooooooooooooooooo much more I am going to do when I am healthy again!
I am sorry to say but his pain never let up and only got worse when he thought it could not not.
He went through all of this with out the help of the hot baths because he can not fit in our bath tub.
No pain meds because his LLMD thought it would interfer with treatment.
We prayed alot, cried alot, and he thought of killing himself because he could not take the pain anymore.
It was a long battle .
Why am I depressing you with this???
Because you should not have to go through it. If the pain becomes to the point where YOU are thinking of not going on or its so bad that you can not function normally (If you have kids) then there are pain meds out there for you.
My husband finally got help for his depression brought on by this Lyme, and he finally said YES I need pain medicine.
We switched to a very nice LLMD who tried differnt pain meds till she found the right one.
This information I share is only for those who are in pain 24/7 like my husband was. Not for those who herx in a regular cycle when at only certain times there pain increases.
Please find a good LLMD that will help with the pain.
As a wife that watched her husband suffer (it hurt him to walk) and seeing what it done to him, (severe depression) I don't want it to happen to anyone else .
He now is in remission from lyme (YES)
But, I believe he will never be 100% healthy
His knees are pretty much shot from all his weight gain as well as his back.
For that he is doing accupuncture. His energy level is still low ( But his testostrone levels have been messed up)
I hope I have not rambled on to much. Just really wanted you to know that if he had it to do all over again, he would have been more demanding about getting help for the pain sooner instead of suffering for so long.
He tried Morphine (did not help) Then percocet ( that has helped alot)
Also someone gave me the name Lycria as a medicine that you may want to ask your doctor about .
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
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posted
I have had a lot of problems with pain and one of the things my lyme doctor prescribed me was Lidocane patches... they're called Lidoderm. They're a little bigger than a pop-tart. You can use up to 3 at one time and for up to 12 hours. It has been a big help with my arthritic knees and muscle pain!
-------------------- "Faith is the confident assurance that the things we hope for will happen; it is the evidence of things we cannot yet see" - Hebrews 11:1 Posts: 3 | From Virginia | Registered: Oct 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Yes pain does go away. And stay away longer and longer.
8 years sick. 1 year of that on antibiotics.
Now if I had more stamina and wasn't so tired.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
I'm in pain 24/7 and absolutely miserable. Still in the first year of treatment. My pain med normally works but for months it's not been helping much. Now I'm barely able to sleep day or night. I take what is allowed, the max on my pain med and I am still in pain and unable to function. I.e. do more than get out of bed and go to the bathroom, which can take hours gearing up for that, because I hurt so much, and I have to time it lately with the pain med.
Any advice? Is this what you all go through too??? It's just so horrible and I don't think anybody understands how severe the pain is that doesn't have lyme. I am calling my LLMD to complain and say I need something else...this just isn't cutting it. I have no energy or joy to do anything, because the pain is so draining. I need a new pain medicine or a combo for when it's this bad.
I had several weeks like this a month or so ago, and suffered through, being flat out in bed. All I want is the pain controlled so I can somewhat enjoy life, and get out of bed and be remotely "normal." I just don't think that's asking too much.
Posts: 114 | From USA | Registered: Sep 2005
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posted
Hi Blackbird, I relate to this horrible pain. Mine was not only in my joints-that was the least of it, it was an evil pain that was inside my nerves. It hurt to open my eyes, breath or be awake. My teeth and brain pulsed with lacerating pain and my chest stabbed during each hearbeat.
I would lay in bed crying for days on end.
This is how I was before treatment..Oct-dec 05 and then when I started taking abx, this pain waxed and waned but I still had moments where I didn't think I could go on.
Now I am on an abx break-it has been 11 days off them and I am having more good days than bad. Have not had the worst of the worst pains as before.
I go back on abx this wed. My lld does one month on combo abx then two weeks off untill symptoms are gone. I am honestly afraid to go back on but know it will help in the long run.
Just a thought but maybe your abx are too strong right now and you need a break. Can't hurt you but may give you moments of relief that bring hope back into your heart.
For the first time in many months I am beginning to think I may be able to lead a semi normal life.
-------------------- We are spiritual beings on a human journey...
I'm in pain 24/7 and absolutely miserable. Still in the first year of treatment. My pain med normally works but for months it's not been helping much.
Now I'm barely able to sleep day or night. I take what is allowed, the max on my pain med and I am still in pain and unable to function.
I.e. do more than get out of bed and go to the bathroom, which can take hours gearing up for that, because I hurt so much, and I have to time it lately with the pain med.
Any advice? Is this what you all go through too???
It's just so horrible and I don't think anybody understands how severe the pain is that doesn't have lyme.
I am calling my LLMD to complain and say I need something else...this just isn't cutting it.
I have no energy or joy to do anything, because the pain is so draining. I need a new pain medicine or a combo for when it's this bad.
I had several weeks like this a month or so ago, and suffered through, being flat out in bed.
All I want is the pain controlled so I can somewhat enjoy life, and get out of bed and be remotely "normal." I just don't think that's asking too much.
Blackbird, we are basicly the same, except I'm not confined to bed. 24/7 pain is the pits but I use frozen ice packs and moistened heating pad to put on my worst areas of pain: groin area, right shoulder, and lower back.
Blackbird/others, for us neuro lymies, please hit the enter key more often ok. We need shorter lines of 6-8 and then DOUBLE space between them. We can't read/comprehend otherwise. Thanks for helping us all out.
We unfortunately WITHOUT our consent, gave up our "normal" life the minute that darn tick bite us giving us lyme and/or co-infections!
I count my blessings since I've read of so many of you being confined to bed for months and up to 1 year.
My lyme began in 1970, and I worked full-time from 1968=1998, 30 yrs. 6 months. I pushed myself to the limit, and also had 8 immediate family members die!
So I was the bottom of my rope when I left/quit state govt. WITHOUT ANY BENEFITS! Thankfully, hubby retired with FULL benefits 1 yr. prior so I was able to get on his health insurance plan; thank God.
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JimBoB
Unregistered
posted
People, IF you REALLY want to be without pain, read Buhners Book, Healing Lyme, FOLLOW his protocol and extended protocol, and IF you have been on abx for more than two months, STOP. Then do the herbs only.
I had terrible pain too, before i started herbs. It went away, as did the brain fog, bad vision, chest pains, etc., THEN I started abx for two months, and couldn't stand it again.
I quit abx last Tuesday. Now today, I was MUCH better again. HOPE to be even better tomorrow and better yet the next day.
ONE of these days, I hope to be better than BEFORE I got Lyme, even.
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