my son is 17 and has had lyme for at least 2 yrs that we can figure out. he was just diagnosed last sept and did a run of doxy with no results and then no dr would touch him with a 10 foot pole, we went thru a slew of drs to get where we are now with a dr that wants to treat him with iv. his joints are very involved and he will be doing physical therapy after the iv is done. most drs seem to think he shouldnt be in as much pain as he is and that arthritis shouldnt be this painful. he is in constant severe pain to the point he bangs his head into the wall trying to escape it. he is now on some pain meds as well as anxiety meds now. he has gone from 160 lbs to a mere 120 and still losing, without the pain meds he is so uncomfortable he doesnt eat at all. he also has a positive ana test for lupus but that i am not buying into and im hopeful it will be different once the lyme is under control. do most lymies go thru such pain or is it posible from the ana test?
Posted by trails (Member # 1620) on :
I have been lying in bed and the weight of my own body pressing against my muscles is enough to make me wince constantly.
Some of his pain may be NERVE pain and not so much arthitis, it is difficult to discribe this pain and it is so very intense! Do a search on google about nerve pain, you will learn a lot!
best to you guys! Trails
Posted by map1131 (Member # 2022) on :
Tina, sometimes the best pain killer I've had is detox baths. On my worst days, much like you son feeling I would start my day in a hot bath with 2-3 cups epsom salt, 5 minutes later add 1 cup baking soda. Have him lay back in the hot tub, turn the radio on and relax for 20 minutes.
After the soak, have him wrap himself up in warm clothing and continue to make himself sweat and retain the heat for as long as possible. This can be repeated again in the evening.
It takes the edge off.
Pam
Posted by Lymetoo (Member # 743) on :
There has been research which showed that the pain of Lyme can be more intense than post-operative pain! I can attest to that fact!!
Posted by tequeslady (Member # 6832) on :
YES. The pain was absolutely horrible!! I recall telling a friend of mine that I used to workout with that it was like having knee surgery all over your body.
Let me clarify... when I had arthroscopic surgery once, I let the pain meds wear off the night of the surgery. Quite painful.
At my worst, lyme was like that kind of pain EVERYWHERE. I remember thinking that I didn't know this much pain existed.
I'm much better now though. Not cooked yet, but getting there, slowly but surely.
Posted by NP40 (Member # 6711) on :
Is your son seeing a lyme literate MD ? At the stage he's at, he needs an expert. You can post in the "Seeking a doctor" section of the forum and someone will privately send you info on a doc.
Continued, long-term abx therapy will bring him around and eventually his pain will subside as he receives treatment.
Posted by pab (Member # 904) on :
I'm a mom of 2 kids (15 & 19) with Lyme. The pain can be that bad. My kids take Tramadol/Tylenol for pain but it just takes the edge off.
Have you been to a pain clinic? They have a lot of options for reducing pain.
Posted by Lymester (Member # 5848) on :
Trails,
I have had the same lying down to try and do some relaxing breathing, and it felt like the weight of my own organs and flesh was that of an elephant.
The pain is excruciating.
Tina, NY - Have you sought Dr. from "Seeking Dr." link?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Tina-ny: to get where we are now with a dr that wants to treat him with iv.
I think she has one. Hope so!
Posted by sofy (Member # 5721) on :
My first episode of lyme in the early 90's was an instant onset of severe pain and loss of movement that just got worse and worse.
It took 6 months to get a diagnosis and then just 8 weeks of doxy and then they decided it was something else. I listented to them like a dummy
I lost all elasticity in my back legs and my butt joints felt like pointed knives that were trying to cut thru my skin. In six months I could not touch my knees and the pain NEVER let up
My arms also lost elasticity and I could not get my hands higher than my head. Could just barely comb my hair.
Terrible insomnia too and trying to sit down was imposible cuz of the pain
They pumped me full of steroids for 2 years and the pain did go away but now my bones will never bee the same and I still have lyme disease.
Beware of quick pain fixes. There is a long term cost.
The pain is no longer such a problem now my main problem is fatigue and the "stupids". High doses of magnesium and stretching keep the pain managable
Posted by 5dana8 (Member # 7935) on :
I use ultram + 2 extra strenth tylonol.
Ultram is non-narcotic - non-addicting.
The only thing is ultram can "wire" some people up.My mom takes it everyday and does't get wired.
I hope your son feels better soon take care & hang in there
Posted by minimonkey (Member # 8693) on :
Pain is absolutely the worst of my symptoms. It is excruciating, to the point of me being unable to function some days (an I have a HIGH pain tolerance!) My pain is mostly muscular.
I can deal with the rest of it -- the weird neuro stuff (I'm late lyme) and the fear and all the rest-- but the pain really knocks me out. I'm on narcotic pain relief at this point.
Posted by skbland (Member # 8644) on :
I've been in pain on and off for over 2 1/2 years. I have a very low tolerance for pain. I take narcotic pain relievers because nothing else helps. I have had doctors look at me skeptically and other doctors who will prescribe them. Nothing over the counter works for me. I've never been in this situation before. All of my life I have been pain free but now the pain just never goes away. I wish something could be done about it and the pain would stop. Unfortunately, I have not found any other way to take it away. And I'm also really sick of those doctors out there who, I'm pretty sure, don't believe I'm in any pain.
Posted by KevinT (Member # 8682) on :
I understand your sons pain. Sadly, I suffer with it too. I was DX with Ankylosing Spindolysis in 93 however now they are saying its not AS. Thinking now it is lyme. Be careful with some pain meds. Some are habit forming. Hot baths may help him along with his other meds. I feel his pain and understand it. I never knew Lyme could be so painful. I have to tell myself that this pain will past. And at times it does. Everything in life that we truly accept undergoes a change, so suffering must become Love.
Posted by tequeslady (Member # 6832) on :
Are you guys seeing Lyme Literate Medical Doctors? I sure hope so.
I ask, because I used to be in this amount of pain, until I started being treated. It's still not wonderful yet, but nothing NEAR what it used to be. Not even close.
No one should have to be in the pain you guys are in. It's horrible.
Posted by minimonkey (Member # 8693) on :
I'm trying to get in with an LLMD right now (everyone around here is full, it seems)-- I only just realized myself (thanks to you all!) that I have Lyme, not "fibromyalgia."
I've been in chronic pain for 15 years now! I so hope that it improves with treatment... I hate taking pain meds, and having to beg for them, and all the rest of it.
Posted by David95928 (Member # 3521) on :
Tina, what is the plan for AFTER the IV treatment. Be very skeptical if told that one round of IV is going to do the trick. Many here can attest otherwise. Most here take an oral antibiotic while on IV and continue afterwards, indefinitely. If you aren't hearing this, I think you and your son need another opinion.
On a different note, there are several teens/young men whose mothers post here. The mothers include Valymom, Blackmon, and Riversinger. It might help your sone to be able to communicate with these guys who are all in active treatment. Also, it might help him to read about the experiences of the University of Florida quarterback, Wyatt Sexton, who is now on the mend.
Finally, about pain. Mine was not excruciating, usually, but it was EVERYWHERE. At one point I posted that the only part of me that didn't hurt was my hair.
Posted by riversinger (Member # 4851) on :
Hi Tina,
My son was lucky never to have that kind of pain, but I experienced it myself. I hope that your doctor is able to find something that gets it under control. Severe pain makes it hard for the body to get down to the work of healing.
If your son does not get relief, speak with the doctor to see if there is another medication that can be tried. Even though various meds have the same strength, different chemical compounds work for different people, so sometimes they need to be switched.
The pain may be neurological as well as arthritic, which may explain why it is worse than most doctors expect. It can get better! The detox baths with Epsom salts helped me a lot, so you can see if they help your son. Some don't tolerate them, so don't force it on him if he doesn't like them.
With arthritic pain, ice packs might help. Experiment with whether heat or cold feels better. You can make heat or cold packs out of cloth bags of rice or flax or other grains, and stick them in the freezer or microwave as best suits.
Hopefully the treatment will help bring his pain levels down quickly. Try to make sure he is drinking enough fluids, as dehydration can increase pain levels. It sounds like maybe he isn't eating? Can you find ways to tempt him into easy, nutritious foods, easy on the sugars? Sugar sets off insulin, which can increase inflammation, NOT what you want.
I'm sorry that you are going through this. I know it is hard to watch your son suffer. Try to take some time to keep yourself recharged, as this can take a lot out of you.
Posted by bettyg (Member # 6147) on :
Welcome Tina to the board. Sorry to hear of your son's pain! ouch.
Tina, Kevin T, and skbland, could you edit/pencil icon your replies here to 6-8 lines of text and DOUBLE SPACE between paragraphs for us chronic lymies.
We can't read/comprehend continuous ONE paragraphs. This is what decades of undx lyme does to our minds. Thanks for helping us be able to help you. Posted by breathwork (Member # 567) on :
Yes..I have been in that much pain...still am periodically.
Fortunately I have a terrific doctor who appreciates that this pain is real.
I've had major surgery several times and this pain is akin to that in a prolonged fashion.
So, believe your son when he tells you how much pain he feels. Get him whatever help he may need.
You're a good mom!
Posted by tequeslady (Member # 6832) on :
Hi Betty:
Question for you. None of the people you mentioned had postings of longer than 8 lines, which you used as your maximum paragraph length.
So, I'm confused. Why the instructions for them to edit?
quote:Originally posted by bettyg: Welcome Tina to the board. Sorry to hear of your son's pain! ouch.
Tina, Kevin T, and skbland, could you edit/pencil icon your replies here to 6-8 lines of text and DOUBLE SPACE between paragraphs for us chronic lymies.
We can't read/comprehend continuous ONE paragraphs. This is what decades of undx lyme does to our minds. Thanks for helping us be able to help you.
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