I know there are several people on this board that have the lesions and I would really appreciate hearing from you.
On days like today where the pain in my head and spine is intolerable and my spine feels as though it is going to lock anytime I feel so alone and so overwhelmed with fear I don't know where to turn. I live alone and everywhere I go in the house I take my phone just in case.
Last night I could not sleep so made some tea around 1 am and went to sit on the porch, as soon as I pulled the door closed I realized I had locked myself out.
I went down the laneway I share with my neighbour, it was so dark and I had no shoes and only in my t-shirt.
I had to stand on a recycle box to unlock the back gate and then got a ladder and a garden tool and broke the basement window put the ladder through the window and laid on my stomach to slide in feet first to get on the ladder and climb into the basement. All the while trying to feel around to remove the broken glass. I was so exhausted and in tears.
No one in my family and the few friends I have left seem to get how serious this is, I get comments like "wow you are on a lot of medication don't you think you should start weaning off" or "it can't be that bad, you look so good" and most of the time I can't believe this is happening myself.
Today is my 65th birthday, my daughter and grandchildren were supposed to come this morning but my granddaughter had a really bad migraine so they could not come. So today I decided to treat myself, haha, I allowed myself time out today and took 2mg of morphine this morning and again this afternoon, ahhh the shear joy of it.
I know I am rambling and thanks for listening, probably will regret this post tomorrow but would really like to have contact with others going through similar things.
Posted by jwall (Member # 22999) on :
Hi, I just wanted to wish you a happy birthday!! My birthday is in July also. Things will get better. I feel your pain - I also have the severe spine pain and acid brain, among many other things. I just started treatment and it's been miserable. I'm so sorry you got locked out. That must have been terrible in the middle of the night. At least you had your tea! Glad to know your daughter and grandaughter are nearby to visit you. Hopefully you can see them soon.
Everyone says it will get better, so i just have to keep reminding myself of this everyday and take one minute at a time and enjoy the present moment. Be grateful for the things that you do have - I practice this a lot and it helps.
Hope you treated yourself to a piece of cake on your birthday??
Posted by maps (Member # 19758) on :
jwall, thank you, yes good I had my tea
Sorry to hear of your pain and yes it can get better I hope your treatment works fast. I have been IV antibiotics since March and the fatigue is a lot better and the brain fog is gone but unfortunately the pain is far worse.
I am scheduled for a spinal ct scan the end of the month and they are scheduling another brain MRI and hopefully it will at least not be worse than August last year. It is going to be stressful waiting.
I think I have a pretty good attitude I just get so worn down with the unrelenting pain. I would like to know what others do for such a severe pain. I am waiting for a neuro appointment where I hope they have suggestions because I can't go on like this.
The family celebrated several upcoming birthdays last week so yes - had too much cake.
Posted by VB (Member # 16824) on :
Hi there. I'm so sorry about what happened. It sometimes seems like just when you think nothing else could possibly go wrong, everything that was even somewhat normal falls apart.
I have been having a LOT of trouble with lower spine pain. The things that really help me with it is icing it every day for a short time (usu. right before bed), using a shiatsu pillow to get at the knots and also to hopefully loosen up any toxins that are "stuck" in my muscles, then using an infrared sauna at least every other day for 45 min. In the sauna I use my hands to massage my muscles as close to my spine as possible to further try to loosen the muscles and get toxins out.
God bless you and Happy Birthday!! V
Posted by mag (Member # 8920) on :
hello maps,
I am mostly recovered from the Lyme Disease, thus I have not been on the board for a while. I did however experience all the brain pain, and the neck stiffness. Initially, I had an MRI which revealed a whopping 30 something lesions.. within a year after the first MRI, the second MRI showed more extensive lesions... I have not had another, but I do know that the pain is minimal now, speech is back, balance is almost normal ... Hope this helps Get well soon Mags
Posted by imagine2 (Member # 3136) on :
Hi maps, WHAT a nightmare you went through. I would have freaked! You were persevering in handling the rotten circumstance. Good for you.
About 10 years ago, i had an MRI that showed multiple brain lesions. I've had a number of MRI's since then and the lesions have been stable. No new ones and no change in the original ones.
I hope you will get a good report. Incidentally, have you asked your dr. about B12 shots? B12 supports myelin. Just a thought.
Posted by Dekrator48 (Member # 18239) on :
maps,
I am so sorry that all of that happened to you.
I do understand pain.
The things that help me the most with the pain are: doxycycline/plaquenil, avoiding sugar and high fructose corn syrup, exercise, diversion, warm showers, and lying down.
Still, I understand what you are saying. The pain is always there. It was so excruciatingly severe 2 years ago when I was trying Ambien CR for sleep that I didn't know how I would survive.
I stopped the Ambien CR and it went from a 10 to an 8...at least it was a little better.
It didn't get any better after that for me until month 9 of my treatment when I went back on doxy/plaquenil.
I went off of doxy for the summer and plan to get right back on it asap.
My pain is worse since switching to another med combo, but not back to the level 8.
Happy Belated 65th Birthday to you!!
I wish for you healing, and only better days ahead.
Let us know how you are doing.
Posted by maps (Member # 19758) on :
Thank you for all your responses, it is uplifting to be heard and listened too.
Imagine2, sorry to hear about your lesion but so happy to feel not alone, if you dont mind I will keep you bookmarked and maybe ask you some more questions. I am also doing the b12 shots.
VB, icing does not work for me it is heat, as soon as my legs hip and back start to get cold the pain becomes severe.
Thank you all for your kind relplies.
Posted by Remember to Smile (Member # 25481) on :
Dear maps, I am among the white-matter impaired.
You are our Heroine of Bravery in the face of obstacles this month!
I created a Birthday thread for you in General.
All best wishes for a wonderful week, and prayers for healing wholeness surround you... Love, Smile
Posted by Remember to Smile (Member # 25481) on :
quote:Originally posted by imagine2: About 10 years ago, i had an MRI that showed multiple brain lesions. I've had a number of MRI's since then and the lesions have been stable. No new ones and no change in the original ones.
I am getting my first brain MRI & EEG next wk, with a ducky neurologist. I don't know what to anticipate. My wonderful LLMD & my ducky PCP both want these test results.
I'm just glad to finally have someone acknowledge my severe cognitive decline.
Imagine2, would you be so kind as to post some more info & tips for us here?
Thanks. Smile
Posted by Lymetoo (Member # 743) on :
I'm so sorry to hear this!!! Must have been frightening!!
Happy birthday -- and -- You have birthday greetings over in General!! Posted by imagine2 (Member # 3136) on :
Remember, I had a ducky neurologist too...a real quacker. Diagnosed me with MS, immediately started me on Avonex shots that made me extremely ill. I was on the shots for 2 years when I got the lyme diagnoses.
All of my MRIs were done with and without contrast. I have continued to get them every couple of years so my llmd can monitor any changes.
I am happy to answer any questions you might have. Don't hesitate to pm me as well.
Posted by Remember to Smile (Member # 25481) on :
Thx! I haven't seen this neurologist before, but he'll basically just be offering a technical screening service for my LLMD.
So, should i insist that my MRI's be done both with and without contrast next week?
The referral doesn't say much and I want to coach ducky neurologist to achieve best useful results.
Posted by lyme in Putnam (Member # 11561) on :
sorry for the late birthday wish, but I hope you feel better soon. I have a few brain lesions and have neurologist appt. next week.
Posted by lymebytes (Member # 11830) on :
I had brain lesions for many years before symptoms appeared and lived very normally/healthy.
My LLMd said a large percentage of the general population has brain lesions and most don't know it.
Lyme can cause brain lesions and sometimes clear with IV treatment.
Lesions can be responsible for migraines to demyelination of nerves, but they can also be asymptomatic. It really depends where they are located and what area of the brain and if gray or white matter lesions. Your Md can explain it better.
Posted by imagine2 (Member # 3136) on :
Smile, I always want with and without contrast because the contrast offers a clearer image, however, your dr has to make the call.
Your referral should indicate "with or without contrast. Might want to call your dr's office just to confirm.
Posted by psr1 (Member # 22957) on :
I too had unbearable spine pain for many months: really wanted to die. Finally got the pain under control with Neurontin and Elavil: with treatment it has gotten much better. I had the lesions as well: went through the whole "is it MS?" thing with a Duck. It DOES get better with treatment. Just try to get through each day. That's what I did - one day at a time.
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