You guys I'm scared. I have had random nerve pain for quite a while and no matter how much I go to therapy, I get panicky over the pain--I get all warm, heart races, GI system goes mad, I feel in this dark hole of hopelessness.
Especially since I don't know the cause precisely or if I'm doing it any good by what I've been doing. It just doesn't seem to change. So no control.
I just want all this to go away! (And yes I do have other symptoms)
I just need some hope! Posted by Lymetoo (Member # 743) on :
You are SURE you checked into MCAS?
Posted by Keebler (Member # 12673) on :
- Do you have GAS heat / AC / stove / oven / water heater, etc?
If so, call your gas company and ask them to check for a gas leak. Seriously. Each symptom you state matches for carbon monoxide poisoning.
And if you have a CO meter, check the batteries, etc. -
Posted by Robin123 (Member # 9197) on :
Interesting theory, Keebler.
Personally, I think you're listing a lot of symptoms. Could indicate a need to discover more treatment that works for you.
Also, when you get panicky, try slow deep breathing. While breathing in and breathing out, count to 2, then 4, then 8, then 16, then as long as you can for each stage, as it works for you. Experiment with the duration of counting, as you can do it. Eventually we get a lot more oxygen in us and that can help.
I try to change my negative thoughts to positive ones. Like, I'm doing the best I can. I'm reaching out for help. I have a doctor. Etc.
When I get negative, I try to think of 10 positive thoughts immediately. Sometimes I say, ok, 10 more. This can help calm down my mood.
Posted by Bartenderbonnie (Member # 49177) on :
Pain is the absolute worst. No one understands our pain.
Are you still treating? Do you have symptoms familiar to when your Lyme was active ? Has the nerve pain ever gone away ?
I take gabapentin at night, it really helps me. Can't take it during the day, puts me to sleep.
I take Epsom salt baths and it gives me relief for a few hours.
I had to quit Physical therapy, made me worse, left crying.
I take it 1 day at a time. Deal with it as it comes. Much more calm. 1st time around was brutal. Stronger in spirit now. Hope you find relief. Hang in there 6Hypnone.
Posted by willbeatthis (Member # 31111) on :
Nerve pain is anxiety provoking no doubt. I have seen a big correlation with what I eat and nerve pain. Keto and gut healing diet -GAPS has done wonders. I get bad peripheral neuropathy if I’m not on top of things. In the beginning of my Lyme treatment at times it was very hard to walk. There is hope. Adequately treating Lyme and cos and healthy diet has helped most. Praying for you!
Posted by 6Hypnone (Member # 47629) on :
Thank you. I have asked about mast cells a couple times but my ll doesn't think I match the profile of it. Same with saliciates. Same with sibo. Yes we do have a gas stove. I can ask if they have a detector.
I'm still treating. I. Just saw my LL today and they're thinking the underlying cause may be (always may, not is. Makes me nuts!) mitochondrial as my carnitine is very low, or was a while ago. And said if mito is low, your immune sys can't work right. Gave me a diagram about 'neuro/immune, mitochondria, atp/e+, mito are immature bacteria cells, causes are aluminum, lead, fluoride, emfs, biotoxins'
So they've added 2 types or carnitine, samento, ldn, ziobind or brown algae for a binder instead of charcoal, protandim (mitochondria), garlic and oregano. Also Tribulis for low testosterone. And certain peptides (selak) and another peptide but it's 300$ Took off jap knotweed, charcoal, fish oil, mag, turmeric. Said to add the new things one at a time and that the order didn't matter. But wondering if a certain order would perhaps matter... Tho I wouldn't know what.
Things that remain the same are biocidin, houttuynia, Vit c, zinc, borage/flax oil, msm, igg 2000,phos choline and serine, sacro b, Pinella, glutathione, and collagen.
I do Epsom foot soaks about 3x week. Try to do infrared sauna 1x week. Lemon water. I'm scared to take gabapentin due to weaning off and stuff/effects I felt last time I was on it for 'fibro' bone pain.
Thank u for the breathing stuff. I need any type of calming stuff I can get. I do try it at times, usually 2,2,4. Freak out is just so automatic.
They think I have Lyme, mycoplasma, probably some parasites and on the fence on Bart.
Mentioned light therapy and ozone can be helpful but are expensive as hell.
Posted by Lymetoo (Member # 743) on :
I definitely get nerve pain from salicylates. You have to be your own detective on that and on mast cell issues.
Salcylates can have a delayed reaction. It usually IS a delayed reaction. I think from 4 hours to 48 hours. I usually feel it within a few hours.
Posted by 6Hypnone (Member # 47629) on :
Seems tinnitus is the only salicylate symptom I have.
Posted by 6Hypnone (Member # 47629) on :
Seems tinnitus is the only salicylate symptom I have.
![[confused]](graemlins/confused.gif)
![[bonk]](graemlins/bonk.gif)