posted
I think out of ALL of the doctors that I have seen, going to the neurologist always makes me VERY scared and I want to cry. I don't know if I am scared they are going to diagnose me with something I REALLY have and maybe I'm scared to know the truth, or what.
I quit seeing the first neurologist because we didn't get along. I got "fired" from her practice.
Being in so much pain, I'm getting really desperate. Even my LLMD doesn't really get it. I have such bad stabbing pains in my neck, it's constant. It's interfering with my will to hit Lyme full force and eat correctly, be more active, and really get mentally into this long fight.
I feel like I can't beat this because I'm in so much pain that I can't put my whole soul into it because it's stolen because of Lyme!
I feel trapped in my body and I literally can't think straight half of the time. The pain is blinding. I can't stand this. It's so intense that it really is screwing with my head. It's been this way since March and it has made me so sad, so afraid, so tearful, everything.
It's like having an intense real physical burn for this long. It takes it out of me. It's mind blowing.
The other symptoms, I seriously could live with, but this is my NECK. It's right there, so I'm constantly reminded of it when I swallow my own saliva, chew, talk, drink water, anything. It's consuming.
What in the world am I going to do? Why is this in my neck SO BAD? Why my neck? I know I talk about this often but I just can't grasp it.
I went to another Neurologist last week. It was a huge waste of money. I tried to tell him that I had Lyme and show him all of my negative results for everything else and he wanted to do a spinal tap to confirm Lyme with CNS involvement.
I told him that it doesn't always shows up and actually shows up in low numbers and he literally laughed at me. He watched me walk all different ways, did the usual strength testing, reflexes, blah blah blah.
I told him that my muscles feel so tight and there had to be some muscle relaxer that actually worked. I read that ones that are for "rigidity and spacity" are supposed to work better. Does anyone know if this is true?
I would describe my muscles in the top of my back/shoulders all the way up to the base of my skull as being SO TIGHT almost all of the time. It almost feels like my head is going to snap backwards, it feels so tight. It's unreal.
I saw a piece of paper for a Neurologist that reads "Neurological Pain and Rehabilitation Institute" and I made an appt.
I want someone to help me with my neuro issues. I can deal with the pin pricks in my hands and feet that only occur seldomly. The annoying twitches and muscle jerks. But this PAIN is too much you guys.
What am I supposed to do? I have a high pain tolerance and this is blowing my mind. I'm in so much pain that I constantly walk around and wonder what's really wrong with me. It's wearing on my mind, it has taken away my life, I wake up and tears roll down my cheeks because I know it's another long day filled with pain and worry.
My life has been reduced to one that was wonderful to one that is painful and scary.
I want someone to understand how painful this is. My LLMD doesn't get it. My PCP doesn't get it. The only ones I would THINK that would get it, would be a Neurologist, but I don't have much luck with them either.
I'm scared of them for 2 reasons: They are either going to diagnose me with something that I really have, besides Lyme and whatever it is will kill me. Or, that by going to them and submitting myself to more testing might open Pandora's Box of a misdiagnosis of ALS, MS, or something terrible that I won't be able to get out of my mind - ever.
I'm trapped. I don't know what to do. Oxycontin doesn't even knock out the pain. I'm depressed and scared. This isn't me. I don't feel like I can live like this anymore.
Where do I turn to help me with my pain? Who would understand? Lyrica, Neurontin, Cymbalta are a joke. Oxycontin doesn't work. Xanax works but it has seriously gotten to the point where it takes too much to work any more and I will run out long before I'm supposed to. I don't ever get messed up or dreamy off of it. It literally takes away my pain and that's it. But there is a stigma attached to it and I feel terrible telling people that it helps me. The most that can be rxd is 2mg/3x daily and over the past 7 months or so, the pain is SO INTENSE that I'm already getting tolerant to it.
So, I stopped taking it. Not cold turkey. I got a bad reaction when I said that was the only thing that helps and I said that I'm getting tolerant to it and don't know what to do. I can't help it if it's the only thing that helps me but I can't live on it either.
I need something else, there has to be an answer out there. I honestly feel like I'm going to snap from the pain. I don't want to live like this anymore but doctors don't get it. IT HURTS.
I feel so misunderstood by doctors and I know that you all know the feeling. I've been through the wringer to get a diagnosis for this pain. Lyme was the diagnosis. I know that treatment can go on for years and I'm telling you all right now that I can't deal with this pain for years.
What does someone do? I don't even feel like this pain is normal! It makes me believe it's "something else".
What would you do if you were me? I'm 27 years old, mommy to a 2 year old. I feel like an old lady and I'm having a really hard time keeping a smile on my face for him anymore.
Someone has to know of something that helps this nerve pain. I'm desperate. Someone please help me. I looked it up Neuropathy and it says that's dubbed the "suicide disease" because of the desperate measures people take to try to get relief.
I can relate to the desperation. There has to be an answer. Does anyone here know????
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Nessa,
You need a pain specialist. Ask your LLMD for a referral. You may have to go through several before you find one that works with you.
There's a 2005 NIH study by Columbia University that revealed the pain of Lyme disease is as severe as the pain felt by patients after surgery.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
I agree, you will probably need to see a pain management doctor.
Until you can see one, some other things you might try are massage and acupuncture.
If heat helps and you can afford an infrared heating pad, I think they help. You will need to order it on the internet.
So sorry you hurt. Sometimes with treatment things get stirred up and the herx is worse. Massage sometimes helps because it helps move the toxins. Hope you get better soon.
Posts: 177 | From God's Grace | Registered: Apr 2007
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posted
I've been to a pain management doctor, that's who gave me the Oxycontin. When you try to explain to them about hot stabbing pains in your neck, they kind of drift off. Unless it has to do with something they understand (at least the one I go to), like a misaligned spine, degenerating disks, or whatever, something obvious, it just seems like another dead end with them.
Once I went and the guy made me cry (a doctor I usually don't see) and said that all he knows about Lyme is that it has Psychological effects and it can make people crazy. Insinuating that it was in my head? Oh my God, if I hear that again, or the ole, anxiety bull crap, I'm going to jump off a roof.
I've been thinking about scheduling an appt to talk to someone about getting my neck deadened. There is a nerve (forgot the name of it) that runs along the sides of your neck, and sometimes I think that might be the culprit. It's *mostly* on the sides of my neck. I think I'm going to see about doing this. If it doesn't work though, that's a lot of money down the drain. If it does, it will be the BEST money ever spent. BUT, since my neck is my main source of pain, it would serve as a sign if I'm getting better or worse, so if that was deadened, my judgement would be a little skewed.
I also have rib pain which could help me in judging getting better. I also "just don't feel good"....but my neck would really tell me if I'm getting better. I'm getting desperate though. I think I'm going to look into it. I saw pictures of them doing the procedure, YUCK. It would sooooo be worth it though.
It's an intense pain, 24/7. I think after 6 months, it's ruining my mental status. I keep pushing through, every day, with such intense pain, I feel like something has to give.
I wish there was neurological pain management doctors. That's why when I saw that piece of paper with the "Neurological Pain and Rehabilitation Institute", I thought maybe this was a chance and gave me a little hope.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Nessa,
Get outside of western medicine for your pain. It is doing you NO GOOD!
See these three people and see if they can help you.
1-D.O. (Doctor of Osteopathy) A D.O. is an MD with even more medical training. He can prescribe drugs but drugs are not what you need. At this moment, drugs are killing you! A D.O. focuses on your muscular/skelatal system, your nervous and your fluid systems (lymph/spinal)He manually brings your body back into balance.
DO's often negate the need for a chiropractor, so see a DO first.
2-See a chiropractor. Your spine could very well be out of line and your muscles are compensating in an attempt to hold your spine together. Straightening the spine could bring significant pain relief.
Usually, both of these doctors are covered by insurance.
3-massage. A massage therapist will gently manipulate your neck, back, skull allowing the muscles to relax. They will find and remove knots that have built up around your problem areas.
At one time, I had to have weekly massages to keep me out of pain. I had a very good massage therapist who could always find my pain and fix it. She was my miracle worker.
Now I only get a massage once a month and I do it not because I am in pain, but to keep from getting back into knots of pain.
My insurance does not cover the massage. Many therapists will give you a discount rate for weekly massages.
pain killers do nothing to resolve the reason you are in pain.
Please try these resources and see if they are able to help you.
My husband has suffered back and joint pain for years. It finally got so bad he began seeing a chiropractor. Not only is he out of pain, but he is sleeping better. He had not expected that one.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Here is a paragraph from my link above. Just in case you are in too much pain to read the entire article.
OMTs can be applied to a variety of health problems, both musculoskeletal and non-musculoskeletal. According to the US Department of Health and Human Services, OMTs are most effective for back and neck pain. In fact, if you have back pain, you may be able to reduce the amount of pain medication you are taking if you receive OMT as part of your therapy. One study showed that patients with pancreatitis were able to go home from the hospital sooner when they had OMT.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
***Note***
For my husband, the osteopath did not work but the chiropractic did. So if one doesn't help, try the other.
For me, the osteopath completely cured my flat feet. I had worn orthotics for years but he eliminated the need. He said I was crooked. It was the darnest thing. His manipulation was very soft and didn't hurt at all, but when he was done, he said "Try going without the orthotics and see how you do."
I have never needed them again and that was 2 yrs ago. I can again wear sandals and even go barefoot with no pain.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I like Luvs' suggestions, but if you are more comfortable with western medicine, then call your LLMD and ask for a referral to a pain clinic that is familiar with the types of pain caused by Lyme.
I have a friend who was referred to one by her LLMD and it has given her a new quality of life, even while in treatment.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Are you sure there are NO Pinched Nerves in your neck?? Buldging disks, etc. ?
Has the area been Mri'd? A good pain specialist can do proceudres to stop pain ith more than pain meds. Check www.spineuniverse.com for lots of pain relief info.
Some may not agree with the options, but your the one living with this awful pain. It might not be lyme related.
Try a pain specialist that treats "sports injuries", they look for things other pain drs don't.
Hope you find relief soon.
-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
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posted
It's been MRI'd. Nothing really. I lost my folder with all of my medical stuff in it.
I know I had a few minimal things but nothing to cause this pain, everyone has agreed. The only thing significant on it was Mastoid Disease. Sometimes I wonder if this is connected. I saw an ENT doc. They want to put tubes in but I need to ask LLMD if it's okay with me being on treatment and all.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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Alv
Unregistered
posted
I am sorry that you are in so much pain.It was me that had this pain from head , spine and all away down to my second finger of my right hand.
I had all coinfections that existed.Nothing could touch the pain only the treatment.
I do not want to scare you but it took over 1 year for the pain to be "NORMAL" for me.It stil comes back when I use the right hand to lift anything.Killing BART and getting lyme out of your cns is what is going to help.
HANG in there.Continue treatment.I hope you do not miss an bug as you can with lab works.
Ironicly one goes down the other one takes over EVEN SHINGLES ( in my case and viruses) that were shut down from my ND.
So hiting the right bug is the key.YOu have inflamation going in there and you need to find the right combo and hit them all and DETOX DETOX DETOX.Sauna does a great job and massage.
Physcal therpaies and Occupational therapy and pain managment did not get rid of it but treatment DID!!
HANG in there ....KEEP killing the bugs.
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I know exackly how you feel.I was first diognosed with M.S. and many years later was finaly tested positive for lyme.
I have been to so many Dr.'s over the years I have lost count.Just last week I went to a new M.D. who my friend recomended and I asked the Dr. if she could please perscribe liquid Nystatin, I have took some recently that my one friend had sent me and it helped me greatly.I told the Dr. that yeast is still an issue for me to this day for I developed it taking ABX for 2 years treating the Lyme, she just spoke to me like I was crazy and said I will not perscribe any more Nystatin for you, one bottle should have gotton rid of it and told me M.S. is a waxing and waining diesese any way and I probaly felt better then just because !
Needles to say I wont be going back to that Dr. again.So my quest continues, I have a apointment with a new M.D. that specialise in yeast, alergy and diet next week,I certainly hope this guy can help me.
I once read this book called " Spontanesly Healing" and what were the common threads that these (most incurable dieseses ) people have in common , and one of the things that were common, was they saw so many Dr.'s and were told by some that they were to dificult to treat. Sound framiliar ?
I also have severe pain flare ups, not in the neck like yours but in the mouth, it's called Trigeminal Neralgia, also called the suicide diesese.When it striks I cant even move my tounge to talk or even eat, it just hurts to much, so I understand the desparation of your pain.
I have found some relief from a D.O., they were mentioned. But he doesent take insurance and he is to expensive for me to see regulary.
I have been taking a herbal protocoal that has really helped me and I can give you the contact info. if you are intrested.I am also doing a ilimination Diet, no glutton, dairy, lugums or eggs and the litlle pain that I did still have has completly went away, so I think looking into food alergys also plays a big role in are pain.
If I can help just one person find relief from this hell I will feel like this pain expierence was worth somthing. Terri
Posts: 203 | From tipp city oh.45371 | Registered: Jul 2003
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It is indicated for neuralgia from shingles, so maybe it would help your neuralgia?? You might ask about it, it is non-narcotic. I totally agree that you need a pain management doctor that will listen and work with you.
I know that chiropractors have little devices I think are called TENS (google it) that have little pads that you stick on your muscles and they stimulate them with varying degrees of electricity. It helped me when I had torticollis....I realize you might be well beyond something like that but I thought I would throw it out there.
Okay, I really hope you get some relief soon. Take care
I used to have the neck shoulder locked. Massage did help some. For the head pain I used a Hulda Clark Zapper. That always seemed to help me.
I go to an excellent acupunturist who helps with almost anything. I had a huge infection from a tooth extraction and she brought it back down from behind my eye to the jaw.
It was a really bad infection. If you consider it, ask around for a good recommendation. They are not all the same.
This is not medical advice, just sharing what personal experience.
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
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posted
I would just like to add one more suggestion to Luv's list: physical therapy. I have weekly PT, paid for by insurance, unlike massage. My PT does massage as well as trigger point release stuff. She is so excellent!
In the past, I could not go a day without pain in my neck mostly, but also my shoulders. Since I started with her, I feel almost human again. The pain is still there most of the time, but greatly, and I mean greatly, diminished.
She has also shown me some self-help release moves that help tremendously. I also have a home traction unit that I use daily.
All PT's that I have seen in the past have told me that my head is screwed on too tight
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