posted
My neck neuralgias or whatever you call them, stabbing, burning pains, tight feeling skin, all the way up to my face...it is literally driving me insane.
There has to be another way to deal with this. I have one week til my llmd appt but then what? The pain is still going to be there. WHAT CAN I DO?
If it wasn't for having my son....well, you know.
I can't take it.
So to be honest, the only thing that helps is the infamous benzos, and because I've been on them so long, you wouldn't believe how many I have to take to dull the pain.
I'll be completely honest, I've considered ordering them online, I've semi-doctor shopped when scares the living crap out of me...but it's NOT AT ALL OUT OF ADDICTION OR WANTING TO FEEL HIGH. AT ALL. I'd put my life on that.
I just want to be out of pain. Nothing works. Nothing. Muscle relaxers, nothing.
So, now that the benzo road has come to an end, they don't work any more. WHAT NOW?
What do you do? I've been through immense pain but nothing disables me like this. I can't imagine living like this forever. What's the answer here?
Some people are on antibiotics for years, I can't do this pain thing for years. I can't. Call me a baby. A whiner. Whatever. This pain has stolen my life away.
What do you do for your neuralgias? I've tried Cymbalta, Lyrica, but nothing works. Why? Is it because my brain is telling me I hurt? Or do I really have neck pain? Chicken or the egg?
AND MY RIBS ARE SO SORE AND THROB ALL OF THE TIME, I'm scared of my kids hugging me.
What do I do? Botox? Shots in my neck to deaden the whole dang thing? What? Suggestions.
I can't live my life bathed in Icy Hot and benzos. I just want to be normal.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Nessa,
I am so sorry you are in such pain. Can't you call your LLMD and describe your symptoms?? Maybe even a nurse can get a message to the Dr. if he is with a patient.
Sometimes, they reduce the amount of abx so that your body can get better adapted and you dont suffer so!
Please do call him right away. There is no need to be in such excruciating pain.
Wishing you relief Posts: 1127 | From atlantic city, nj | Registered: May 2008
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posted
Nessa, I am sorry to hear that you are suffering. I am not sure if it would be it would help you or not but I had a RFL (radio frequency lesioning) done on my neck.
It basically burns the nerve endings so you don't feel the pain. I had this done for several herniated disks.
I am unsure whether it would help in your situation but perhaps a neurosurgeon or a well qualified pain doctor would be able to tell you whether it would be an option or not.
Pain medication unfortunately does not help very well with nerve pain. I am not sure why.
Jan
Posts: 90 | From Knoxville, TN | Registered: Jun 2008
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posted
No LLMD yet...first appt is in exactly 1 week from today.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I have a lot of neck pain too. I find that inflammation is the biggest issue for me.
Try an anti-inflammatory (NSAID) for now like perhaps ibuprofen and see if that helps. You want to be careful with over the counter anti-inflammatory medication though so be sure to only take it short term.
A few things that help with inflammation. Avea - Mood, Liquid Extract, NutraMedix Bromelain Digestive enzymes on an empty stomach Feverfew Fish Oil Noni, NutraMedix Quercitin Rutin Serraflazyme Turmeric
I can't guarantee that inflammation is your problem but I think it is for most lyme patients.
Be sure to check with your LLMD while in treatment to ensure that you aren't taking anything that is contra-indicated.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
The pain aspect of lyme and all is so hard.
These are some suggestions that might help,but will probably not take it all away.
What muscle relaxers have you tried? My daughter is the lymie and the one that works the best for her is zanaflex. If one doesn't work, ask to try another.
Wobenzyme is an enzyme formula that helps with inflamation. It comes in pills and they make a cream. The pills are expensive but worth it if they help, but the cream is inexpensive and may be helpful.
There is an infrared heating pad that someone here recommended. It was expensive, but I like it and think it helps with knee pain and back pain. It was around $200, but I think there was a smaller one that was not as expensive. I think the company was Thermatex.
We use essential oils. My daughter uses peppermint and marjoram on her back and neck. You mix about 8 drops with a tablespoon of almond oil and apply it with a Q-tip.
Ice packs help her also.
Posts: 177 | From God's Grace | Registered: Apr 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Maybe you can locate a pain specialist? Oxycontin & Vicodin help me get through the bad times with pain.
No one here using pain meds is considered an addict... Addicts are generally people who are well. It's so not about that!
Serious pain requires serious measures. Baths in Epsom salt, far infrared saunas, cranial sacral massage also help me.
Infrared light in general has helped me quite alot! I know it''s kind of far out but it works.
Many of us have been thought very serious pain. Try to relax & not get too anxious. We all know how hard it can be. It's very claustrophobic but try to relax & calm down. Relaxation does help.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Going gluten free has helped the pain subside tremendously. Of all the changes that is the one that has no leeway for my body.
I think that is why a gluten-free diet is strongly encouraged with this.
Magnesium, too, is really helpful. I could not do without it.
B-6 and Melatonin, to sleep, will help then with pain as sleep is better.
I found that anything that increases the stress on my liver also increases pain. Liver support is vital for pain reduction.
Unfortunately, this will take time. Remember, though, that many do see improvement.
And "google" them to find out if you can purchase them OTC.
Posts: 9426 | From Sunshine State | Registered: Mar 2001
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tailz
Unregistered
posted
I wish I had some answers for you - I think benzos had stopped working for me also.
I was on Klonopin, and I have too much pride to ever have to BEG for them again and reassure them that I'm not the druggie they think I am.
Probably not exactly what you want to hear, but when I reach the end of my rope with what I can tolerate - I have it all planned out already, and I got close the other night and today again.
I have a box full of benzos I've never taken that I plan to ingest. I forget how many bottles of it - 6?
I'll leave a nice long note in my house - maybe even here on Lymenet, so that Lyme gets some media attention after I'm gone.
Sorry if I depressed you, but I don't think anybody should have to live like this - even animals are euthanized. There's just no way I'm going to sit here with magnetic iron oxide in my brain forever, knowing how it got there (exposure to EMF/RF) - and I've yet to find even one American doctor who will listen to me.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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NATIONWIDE SUICIDE HOTLINE 1-800-784-2433
======================================
And - on the inside cover of your phone book is a number for the suicide prevention hotline for your area.
======================================
Yes, there are many sad stories here and while it can be therapeutic to give voice to pain and share sadness, it also can be very scary for others.
We also don't know everything about the other stories we hear. Genetics, diagnoses, circumstances and life-styles, certainly, are not be the same all around for everyone.
Stealth infections like lyme/TBD really force patients to really step up to the plate in ways we never thought imaginable. It is a whole new world and after the shock sinks in, we can move on.
We pretty much have to say "yeah, this is rough . . . take a breath . . . cry . . . shout . . . and then come to terms with it in a way that frees us to look forward.
Remember that this can change. We learn more about lyme/TBD everyday. Sometimes, just a few changes in routine or protocol can make a world of difference.
Yes, it is bad right now. And, the answer is not easy. However, things can get better.
Learning to breathe through the pain is just a beginning but, by breathing with it and through it, we get some freedom to go on from there.
======================================
Remember that everything you put into your body goes through the liver. If your liver is overworked, fatigue, brain fog and pain are just one result.
Lyme really hits the liver. But lyme also really hits the nerves. So when nerves are inflamed, it's essential to address that.
Of course, there are some meds and OTC things that might help.
But loading up on stuff is just going to be more toxic to the liver and create more pain. So, be very selective in what and how much you use.
On the flip side, sometimes very high doses of some meds work very well when lower doses did not.
Expert advice and knowledge of how the meds work is vital. Increasing the dose, even a little bit - for some meds - can be fatal.
=======
I remember in 1984 as my mother lay dying from AIDS/HIV from transfusion and in tremendous nerve pain that all they would give here was tylenol #3 (with codeine) and it did not touch the pain.
There had been an new magazine feature on one of the networks about the use of heroine for pain control in cancer patients in England.
They did great and were more alert than with morphine. And, for those in whose cancer remitted, they weaned off the heroine and were not addicted at all. They did not want more once the pain left.
So, certain drugs - the right drugs - can meet the pain head-on for a dance.
I am in NO way suggesting you go find heroine as it was done in a very controlled and safe way in the UK at that time. Since it's illegal here, supplies are risky - and you could face a change in your living quarters that would be undesirable, at the least.
Still, it shows that the right chemicals can work where others fail.
====
Some pain meds increase pain in some - mostly due to liver clearance issues. Some pain meds work for some that don't work for others. And, the more you support and care for your liver - even if you take a carefully chosen pain med - the liver is going to work with you.
One herbal treatment that seems to help with pain is corydalis.
A warm bath with epson salts can help bring down the pain level, too.
I hope you find ways to manage this and then land on a good treatment plan.
I'll bet many of us wonder if we can make it through. There are enough who have to offer hope.
If you can, try watching some funny movies for your daily enjoyment. It's important to plan something to enjoy or appreciate.
Even when in pain, laughter may give you a good shot of natural feel-good chemicals. (Non-violent) movies are a bit of magic, too. Travel DVDs are great, too. Libraries are full of them. And my library will deliver right to me.
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[ 22. July 2008, 06:53 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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tailz
Unregistered
posted
Tylenol is also very toxic to the liver - I ended up in ICU after ingesting a bottle of extra-strength Tylenol when I was 18.
And that was even when my bart rash appeared for the very first time - while I was in the hospital. And here I thought it was only a stretch mark because they made me gain 10 lbs in 4 days.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
I am just in tears. This is from a girl who graduated from basic training, didn't cry from tattoos, or from my many piercings (who I took out, of course, because I have kids now!). I could take lots of pain.
This, brings me to shambles. I don't know what to do. The benzos stop working, now what??
They've given me vicodin, Oxycodone, Morphine, you name it, I've tried it. It didn't TOUCH the pain. Not at all. I have Zanaflex, it doesn't help either.
It's weird because it's something to do with my brain/central nervous system. Nothing touches it. Because none of the regular drugs touch it, ppl think it's in my head and have no clue what to do with me.
THERE HAS TO BE SOMETHING. What is it. I don't know if it's literal inflammation, like in my spine/neck bones or whatever, it's my muscles, nerves, skin.
What the heck works on that?
In the mean while, my husband is being a total jerk. So, what if there are toys on the floor, or a little bit of lunch crumbs on the table? I DON'T GIVE A CRAP RIGHT NOW. For the most part, I keep it clean. It's NEVER ever ever "dirty" or "filthy". Well to add to my already terrible day, he decided to (in front of my kids) berate me, tell me that having yesterday's crumbs on the table was unsanitary (they were from LUNCH from that day - AND WE HAVE A 2 YEAR OLD), and then we I started crying, he said quit being dramatic, blah blah. I locked myself in the bedroom for the rest of the night.
DO YOUR HUSBANDS CARE THAT THINGS AREN'T PERFECT? When I was healthy, my house was ALWAYS impeccable. Now I'm not healthy, and it's not perfect.
He might have taken out a loan to get me fixed (hopefully) but he's freakin nuts about cleanliness and he's an A******!!!!!!!
Okay, I'm done.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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The toxin build up from die of , put's me in more pain and inflammation. Rather than come of Abx, I cut right down, to keep Lyme at bay, but allowed me time to drink more , and swill toxin's out.
I agree with some of the other's , adding MORE pain killer's , will add more toxin's, that your kidney's etc, has to deal with. You do not say if you are on high dose or not , this may not be helpful to you , as you you may not have a toxin build up.
Only you will know that. Glad you can talk to your Dr soon. We all know how horrible this can be. I know, it's a daily struggle for me also.
Posts: 153 | From England | Registered: Jun 2008
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posted
Thanks for all of the support and for listening to my whining. I'm going to grit my teeth and try to clean my house spic and span before hubby gets home just to show him I CAN. God you should see our house. It's always clean. Maybe I don't scrub the table after every meal, but it's not that dirty, but it gets sanitized every single night. So, I have a 2500sq ft house to clean today. Good luck me.
But please don't forget, thanks for the support, I need any support I can get.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
ive been living with pain like you describe for almost 2 yrs.
all i can say is think about your kid/s, tough it out, and itll get better.
its hard to deal with/accept at first, but once you get used to it it becomes easier.
its only just begun, you have a long way to go, try to hang in there
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
nessa you might want to explore some homeopathic remedies from Heel, usa... internal traumeel might help. it helped me with massive nerve entrapment/damage/pain of 3 years following a nasty injury and scar tissue buildup, then surgeries which fixed the muscle tears but only tightened the area that was already in agony.
definitely call the upledger institute!!!!!!!!!! they can refer you to someone who can aid you in releiving your pains...it helped me dramatically.
best john
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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posted
Nessa - pain from this illness is like no other.
I understand completely. I am no wimp either, but
the head pain and other neuro pain can bring me
to my knees.
I have never found meds to help with pain.
What has helped myself and one of my children
is a LLPT. I did not believe that a physical
therapist could help us
but at the time we were desperate for relief.
My daughter and I were in terrible pain. I knew
that the pain meds would not work on me. And did
not want to give anything toxic to my daughter,
she was already taking alot of abx.
Another poster here mentioned acupuncture.
I have a friend who has found relief with this.
What ever method you are willing to try, it is
much less invasive to your body.
If it is pain along a nerve path, there is
treatment for this.
You mention your neck. My neck was so swollen,
the lymph nodes needed draining. Our pt taught
me a simple release that I use on a daily basis.
Detox is a problem when you have a high kill off.
I hope something here helps.
It is easy for us to say this too shall pass.
Only a few weeks ago I was again in that sort of
pain, and felt that I could not take it anymore.
It does pass, and when it does we have to move
on.
But for now know that you can vent here, it
helps.
Best wishes.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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There are a couple threads today about music. Mozart, more than any other classical musician, created music that is in tune with the body.
If you have any Mozart - or Haydn - or if you can tune into your classical radio station - you might find your brain benefiting from that.
Now, sometimes some classical composers can be rather heavy, dark and unsettling. You'll know it when you hear it and just turn off the radio and come back when they have more upbeat music on.
Beyond classical, harp music with Celtic tunes seems to resonate or Native American flute music.
much more to sound and music - it can be magic - or at least a bit of magic.
What others say about spine nerves and LL PT is very valid.
The Upledger Institute has a particular training of D.O. s & P.T.s and some D. C. s
I've had a D.O. who is Upledger trained, working with me and it has helped a lot. My PT also is Upledger trained.
they are in your state, as I recall. Look them up on the web and see who has taken their training. Call your LLMD's office and get PTs names from them, too.
Do NOT let anyone work on you and do cranial-sacral treatments until you know that they have been through specialized training.
==
The Upledger Institute, Inc.
Founded by John E. Upledger, they offer workshops and clinical services in craniosacral therapy and other techniques.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
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