but I have been screaming and crying from pain for 4 years,
I have tried everything,
last week i ran out of one of my pain killers,
so on top of the horrible pain that I already feel, now it has gotten way worse!!!!!
no doctor would help me, ER doesn't either,
so what else am I supposed to do?
I am already taking 3600 neurontin, and elavil,
Posted by map1131 (Member # 2022) on :
Oh my missing. I'm so sorry you can't get the pain or type doctor tx you deserve. That's just a shame to expect people to go on about life when the pain is so bad....why would you want to do life.
Pain does even more to the body. It's exhausting, adrenals are crazy, the brain doesn't function. The biggy is depression.
I'm sure you know this but alcohol is a depressant, so you are only numbing the body and taking things even further down.
All I know to do is prayer that a pain literate/lyme disease literate doctor come together and appear in your life. You might miss the sign dear if you are loaded.
Please don't go on the street for relief. Too many unknowns out there.
If you live near here, this could be a solution for you. I hope and pray so!
Posted by penguingirl (Member # 28688) on :
I'm so sorry missing that you have to go through all this horrible pain.
Drinking would not help with your immune system however, so please don't drink. (also yeast, etc)
I hope someone can help you find a pain dr.
Have you tried acupuncture? I know that might sound hoaky but I have done that for severe endometriosis pain in the past and it really worked (although not too practical because it is only temporary relief).
Posted by Roger1700 (Member # 29719) on :
ever try marijuana? I'm about to that point... can eat it or smoke it... Nothing else works, why not try it..
Posted by missing (Member # 22437) on :
Oh yeah, I forgot about yeast.
I don't drink, and it didn't seem to help anyways.
I am not depressed and have found a wonderful woship song that is really helping.
I play it all the time, and pray and pray.
I am a little bit panicked about getting things done.
I have one of the top LLMD's! He has been trying to help me for 2 years. He has cured a lot of symptoms. I was in rough shape, and my husband thought I was dying.
Pain is really my only symptom. I can handle the joint pains, but I can't handle this raw, all over nerve pain.
I am seeing a pain doctor soon.
Some one here said that they had great results from marajuana.
It is ironic, but now I have a whole new compassion and understanding for people that are on the street, in hospitals, sick and in pain.
We are the lucky ones. We are so blessed to have eachother and great Lyme doctors to help us.
i wish I was rich, because I would pay for every child to be tested. Especially the ones who are in youth jails, or are having serious behavioral issues.
I am just discouraged because I can't even get out of bed.
Posted by missing (Member # 22437) on :
Oh yeah,
I forgot to say that I live in another country than my LLMD, so he can't manage my pain.
Posted by Rene (Member # 4870) on :
My prayers are with you missing. A pain Dr. changed my life. I hope that is the case for you also.
Posted by average joe (Member # 26091) on :
Yep, pain must absolutely be managed. Sounds like you are maxed out on neurontin. I had some strange side effects on a few hundred mg and had to stop taking it.
By the way, you may already be aware but DO NOT stop taking neurontin suddenly. If there comes a point where you want to stop you have to step the dosage down slowly.
As far as I'm concerned they can keep the new designer pain stuff......too many unknowns.
Best thing is good ole opiates. They are tried and true and normally just work.
Please don't let them talk you into taking Lyrica. Way too many horror stories. A lucky few do ok on it but for the most part it is just too risky
Hopefully the pain doc will come up with something that works for you. I don't know if you tried this route or not but I was lucky enough to have a family doc who offered to manage my pain so it wouldn't hurt to ask.
Believe me, I know exactly what you are going through. For quite a while I thought I must have like 3 different kinds of cancer. That in my mind was the only way I could possibly be in so much pain.
All you can do is hang in there. It will get better. If nobody else will help you then keep calling the pain doc to try to get in sooner. Ask if they have a waiting list in case someone cancels. Although I kinda doubt there are many cancelations at the pain clinic, it is still worth a shot.
Of course there is always the aforementioned medical marijuana. Haven't tried it personally but if that were my only recourse I wouldn't hesitate.
I sincerely hope you get the relief you need soon.
Posted by Fuel1212 (Member # 29312) on :
Missing.. prayers for you.
Worship and Spiritual music can get you a pretty good buzz in my opinion. Nothing like feeling the Holy Spirit.
I know you can only do this so long but, for those real tough moments and times.
With love Fuel
Posted by bigstan (Member # 11699) on :
If I could recommend advice missing I suggest you buy some tart Cherry juice concentrate online from Mich.
It is excellent for pain, inflammation, arthritis, gout..Full of antioxidants. No other fruit compares. The downside natural sugar. But I drink this instead of pain pills because it works.
It also has the highest level of antioxidants among fruit and it helps with sleep because of high level melatonin.
Posted by Pantera73 (Member # 29752) on :
Missing, Alcohol feeds the bacterium. dont do that, why feed the beast. God bless.
Posted by tickled1 (Member # 14257) on :
Have you been tested for food allergies, both immediate and delayed? How is your diet?
I have been in REALLY bad shape lately. I have severe leaky gut at this point and I know this b/c I react to most foods. My back has been killing me for several mos. now and I have finally made the connection between diet and pain (I think). I have not been good about my diet b/c I am so limited between food allergies and yeast but I have found on 2 occasions now that within 2 days of eliminating starches/white foods/sugar and avoiding my allergic foods and pretty much only eating meat and veggies that my pain levels drop dramatically in a couple of days.
I thought it was coincidence the first time but I proved it again. I think yeast and klebsiella in the gut are a big issue for me.
Posted by tickled1 (Member # 14257) on :
Are you off gluten?
I thought the whole diet thing was BS for years but now after battling this for years and seeing the direct connection between what I eat and my pain level/brain fog/fatigue I can't ignore how big of a deal diet/leaky gut/yeast and other GI pathogens are.
My next plan of attack is healing my gut which involves tackling yeast and whatever other pathogens I have in my gut, avoiding allergic foods so my gut can heal (hopefully I can reintroduce later without reaction), addressing KPU which also contributes to leaky gut, binding toxins with cholestyramine.
Also, makde sure your don't have hidden mold in your house with an ERMI test.
Posted by lymeboy (Member # 24769) on :
If you are considering drinking, please reconsider. It will make you 100X worse. If it has gotten this bad, you could consider Marijuana. Personally, it is the only thing that has made me feel normal. It will not get you well, it is not a solution, but it is the absolute only thing that has kept me out of the depths of full blown misery.
I cannot use it regularly. I do not currently use it, and I hope to never have to again. It helps me at the time, but in the days to follow I become more confused and more NEURO than usual. I am a bad neuro case, and I probably should not use it. -BUT- when you are at the point of throwing it all away, it will bring you back from the edge. I have talked to many people with different illnesses that have said pot is the only thing that is effective at managing their symptoms. MS sufferers use pot to good results. Cancer patients doing chemo get a great deal of comfort from using it as well. This is based on personal experiences with people that I know.
Like I said, it isn't a solution, but it can help.
Posted by tickled1 (Member # 14257) on :
I am about the most straight laced person you'll meet but many years ago before I knew I had Lyme (I knew I had something just didn't know what), I smoked pot one night and the results were terrifying. I was completely paralyzed. Honestly, I couldn't move. That started happening more frequently years later without smoking pot but that particular incident was scarey. I've only smoked pot twice in my life. I think I may have had lyme since childhood. I am in my mid 30's now. Anyway, pot may not be a good idea either.
Posted by Lymetoo (Member # 743) on :
Avoiding nightshades and gluten could really really help with pain issues.
Nightshades:
eggplant peanuts tomatoes peppers spices white potatoes
Posted by tickled1 (Member # 14257) on :
I have heard that nightshades are inflammatory. Is it the lectin in them Lymetoo?
Oh yeah, and dairy too!
Is read meat a no no too?
Posted by ChrisInMD (Member # 32547) on :
I became an alcoholic for a while due to Lyme. It makes you worse.
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