My mom was diagnosed many years ago with fibromyalgia, and given other symptoms she has, I think she has Lyme. (Working on getting her to see a LLMD.)
7 months ago she had a T8 compression fracture in her spine (she was diagnosed with osteopenia/osteoporosis quite a few years ago).
Since then, she has had nerve pain that wraps around her body roughly in the T8 distribution, and nothing has helped except narcotics on a strict, consistent schedule.
She had several epidurals that diminished the pain somewhat, but her activity level is still incredibly limited.
The doctors have said there's nothing more they can do for her. Is there *any* way Lyme could affect that healing process, basically preventing healing?
Her quality of life sucks, and she feels very depressed and hopeless about it.
Posted by Lymetoo (Member # 743) on :
They can't do surgery?
Treating Lyme could help prevent future damage, but I'm not sure it could help her current situation. I'm very sorry she is in so much pain.
Posted by Robin123 (Member # 9197) on :
So she has seen orthos, etc who have done all the needed imaging?
Can a TENS unit mask the pain from the outside at all, if you know? Anything to take pain down...
Many people are exploring PEMF treatment, if you could google for that. It's electromagnetic treatment that reduces pain and helps bodies repair. It was first used on racehorses to get them back to the track in 1/4 the usual time.
Posted by SLH516 (Member # 48060) on :
I'll look into PEMF. Surgery's not an option (it's just not useful or worth the risk for this type of injury).
She's seen all the doctors she can see, all appropriate imaging has been done, and they all say there's nothing they can do, she's just going to have to accept it and tell her to stay on the narcotics. Long-term narcotics can cause problems with depression, so that's not helping her situation.
Idk if a TENS unit would help for nerves, I think it's meant more for muscles. I would hope if it would help, at least one doctor would've suggested it, but there are a lot of unhelpful doctors out there.
Posted by Lymetoo (Member # 743) on :
I had a TENS unit for awhile and my pain was likely not as bad as hers. After awhile I gave it up because it just didn't do much.
Posted by Rumigirl (Member # 15091) on :
Why aren't they giving her Forteo?? It's an IV med (or is it a shot?) for osteoporosis. I know someone with Lyme who had the same problem with a number of ribs, who was given Forteo to help heal the compression fractures of the ribs.
It sounds like she needs better doctors. ANd, yes, an LLMD. But first she needs more help with the compression fractures. That's BS to say that there is nothing that they can do, except to tell her to take opiods. Maybe she needs the opiods for pain now, but that is no answer to heal the problem!
Actually, come to think of it, I believe it was this friend's LLMD who ordered the Forteo when her other doctors weren't doing it!! I don't know if all LLMD's would have the knowledge to do this, however.
Another idea for pain is Lyrica, which is good for nerve pain. I had to play around with different dosages, as I am super sensitive. I don't take it around the clock (because I'd be too out of it), but she will surely need it around the clock. Usually, it's a twice a day dosage, but it can be 3 times a day, at, say, 100 mg. This is NOT medical advice, just info from my own experience.
That kind of pain is NOT something anyone should have to endure without a lot of help. Yes, that kind of pain and disability does make one feel hopeless. Trust me, I know! (I don't have compression fractures, but a ton of nerve pain).
Don't take "no" for an answer here. She probably needs your help now to get the right help---that's why you're here.
Posted by bluelyme (Member # 47170) on :
Ozone in my c5 has helped some with bvt ...also mucuna has dopamine which has helped depression ...biotics makes one ..also lith orate ...my uncle uses tramadol ,lidocain patches and gabapentin ...it messed him up but he works some
for the pain cordyalis has helped ...
Posted by sammy (Member # 13952) on :
I'm sorry to hear that your mom is suffering. Compression fractures can be terribly painful.
Surgery to aid in healing the bone, vertebralplasty or kyphoplasty, must be done ASAP while the bone is beginning to heal before it has rehardened.
For some people, the kyphoplasty can relieve their pain. The procedure is less likely to work if the fracture is not "fresh".
I've had 10 compression fractures with 4 kyphoplasties. (Insurance approval was too slow and would only approve 2 bones at a time...) So I still struggle with unbelievable pain.
My endocrinologist specializing in bone health told me to picture my spine like this:
You know those styrofoam cups, crumple some up, then try to stack one broken cup on top of another on top of another, It doesn't work so well does it? The cups just want to fall down...
The cups represent our compressed, broken, poorly healed, painful bones. It also reveals how hard it is for our bodies (muscles) to maintain upright posture (as the cups continuously want to fall.)
I did a course of Forteo but you can only take that for 2 years. Now I'm on Prolia to increase my bone density. I would highly recommend that your mother talk with her doctor if she is not already on one of these. Along with Calcium, Magnesium, & Vit D to prevent further fractures.
As with your mom, the pain limits my activity. The only thing that helps some is rest, heat, and medication. Tens and epidurals did not work for me.
From what I understand, it is pretty typical to experience continued pain and neurological symptoms after this type of fracture.
So even though I was already diagnosed with and treating Lyme, I do not believe that the Lyme caused my osteoporosis or the fractures, the continued pain or neuro symptoms.
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by SLH516: Since then, she has had nerve pain that wraps around her body roughly in the T8 distribution, and nothing has helped except narcotics on a strict, consistent schedule.
. Look into PEMF, pulsed electro magnetic field therapy.