I have been in a lot of pain lately. Most likely from over doing it, but I don’t have a choice. I don’t have any help with the boys or the house and they are a very messy combo. I will go to the Spinal Specialist in the morning to see what needs to be done with my herniated discs. Most likely another surgery, but I will do ANYTHING at this point for a perminate fix. I just don’t want to have to turn to pain meds, because I am afraid of becoming dependant. I have been taking my Mobic ( Super Advil) twice and Tylenol 3-4 times per day, but it’s just not cutting it. I have also tried to talk to others about my pain, as a release, but I find people are just getting annoyed. I guess they had heard enough when it came to the Chiari and thought that surgery would stop all of the complaining, but now another issue and another possible surgery. Just wish someone would understand. I find myself turning to food to help ease the pain, even thought I know it’s not, but I need something else to focus on. I just really hurt and found last night to be the worst of it. As I was attempting to put my 3 boys to bed, while searching for pj’s, I collapsed on the bed and just couldn’t move any more. Thankfully my husband was home and my oldest son rand to get him. I went to bed with the boys at 7:30pm and woke at 6:30am. I still feel horrible today, just pray for some answers in the am. I need something to give, because I don’t think I can go another day like this. So sorry to vent here, but I really needed to. Is there ever an end?!?
OH MY DEAR CRYSTAL,
I wish I could get in my car and drive to Albany and give you a hug..but gentle hug!! I know exactly how you are feeling emotionally and I cannot say I know about your physical pain, b/c everyones is different...I hear ya about not wanting to take the 'big guns' as far as meds go...I find OTC stuff useless...yet I fear when I ask dr. for narcotics I look like a 'drug seeker'....
Everyone in my home and entire family for that matter is 'over the Chiari"...I believe their stance is...you were treated..now get on with it....even though I have been in our local ER, I think 6-7 now in the past 8-9 weeks over all these falls!!! I am sorry, it gets embarrassing.My hubby has been helpful beyond belief around the house (he is laid off work so he does have some time) anyway...he is helpful..but it is my own insecurity that makes me feel like a bad wife/mom because here I am AGAIN...INJURED....hobbling around..it gets depressing...Even though , I truly believe God has a plan and I am a spiritual person...I still get anxious and depressed....Then I get to the point where I don't say a thing to anyone (except you guys) because I know they are ALL sick of the crap. Which in turn adds to my anxiety and depression.
Crystal...we all comfort ourselves with something...I smoke ciggs.., you sometimes over eat..I also over eat to fill the void sometimes..just last night, I could not sleep at all...during the day I did not eat 1 thing b/c of the pain..well...I made up for it from 2am-4pm..LOL....I polished off the ice cream and 1/2 the box of cookies!!!! I am what one would call an all or nothing type person..in that area!!!
Crystal...Thank you for sharing your feelings....it makes it easier for others to share theirs and know they are not alone.
Love ya,
Lori
Thanks Abby. Wish you were near by too. Would love for someone to be close that understands and is willing to make the effort of friendship.
Much Love and Blessings,
Crystal
PS I think it is ok to eat yourself sick when it comes to watermelon :o) ENJOY!
Abby said:
Crystal,
Honey, I wondered why you were not on, just thought you to be busy with the boys. People seem to think that the surgery fixes your problem, but it don't fix everything does it? I get the fact that folks don't understand when we say we hurt.
I have a confession to make too, since watermelon season is in, I have eaten my self crazy with it. Love that stuff, and when were stressed, we tend to eat. I totally get that one too.
Honey, you really do need some help at your house. Know your husband helps you, but you are still having issues and it has not been that long ago since you had your surgery. You are still healing and from everything I have read, it takes time.
Please keep us informed about what your doctor says about your spine. Your EDS is still another issue.
Wish I lived close to you.
Sending you love, hugs, and prayers, Abby
Thanks for understanding and sharing. It makes me feel no so alone with my issues. Though I do wish that none of us had to suffer.
Much Love and Blessings,
Crystal
lori said:
OH MY DEAR CRYSTAL,
I wish I could get in my car and drive to Albany and give you a hug..but gentle hug!! I know exactly how you are feeling emotionally and I cannot say I know about your physical pain, b/c everyones is different...I hear ya about not wanting to take the 'big guns' as far as meds go...I find OTC stuff useless...yet I fear when I ask dr. for narcotics I look like a 'drug seeker'....
Everyone in my home and entire family for that matter is 'over the Chiari"...I believe their stance is...you were treated..now get on with it....even though I have been in our local ER, I think 6-7 now in the past 8-9 weeks over all these falls!!! I am sorry, it gets embarrassing.My hubby has been helpful beyond belief around the house (he is laid off work so he does have some time) anyway...he is helpful..but it is my own insecurity that makes me feel like a bad wife/mom because here I am AGAIN...INJURED....hobbling around..it gets depressing...Even though , I truly believe God has a plan and I am a spiritual person...I still get anxious and depressed....Then I get to the point where I don't say a thing to anyone (except you guys) because I know they are ALL sick of the crap. Which in turn adds to my anxiety and depression.
Crystal...we all comfort ourselves with something...I smoke ciggs.., you sometimes over eat..I also over eat to fill the void sometimes..just last night, I could not sleep at all...during the day I did not eat 1 thing b/c of the pain..well...I made up for it from 2am-4pm..LOL....I polished off the ice cream and 1/2 the box of cookies!!!! I am what one would call an all or nothing type person..in that area!!!
Crystal...Thank you for sharing your feelings....it makes it easier for others to share theirs and know they are not alone.
Love ya,
Lori
So today another Dr. appt and still no answers. First 4 herniated discs (C3,4,5 &6), then no herniated discs, now nerve damage at C$ that is unexplainable. Could someone just figure this out and let me be fixed already. It is SO frustrating that I don't have an answer, but have to go to these Dr.'s and pay the co-pay for NOTHING!! Going to try more steriods and then will go from there. Maybe in the end I'll at least be "buff" from all the roids (LOL). Always trying to find the bright side of things, even though it is getting harder each day. Will keep you posted.
Much Love and Blessings,
Crystal
I'm all for it!! Would just need to get my hubby on board, because he hates the heat and is very much a snow nunny. When I do I'll look you up and have a watermelon in hand. Thanks for the support.
Much Love and Blessings,
Crystal
Abby said:
Gosh, Crystal,
Can't believe the doctors had no answers for you honey. I would be frustrated too, and am some times. You do a great job of seeing the brighter side and I think your awesome for it. You can move down south with me, we'd eat lots of watermelon and have a good time, even when it is not a good day., we'd make it fun.
Sending you lots of gentle hugs,
Love, Abby
Just spoke to a local "Zipperhead" and she says her and another girl both have the same issue. She says it is from the surgery and that I would find others (Zipperheads) that have the same problem, because of where they cut the muscle in the neck. I am so sorry if you are one of us that have this pain and problem. She suggested a Dr. that gives Botox shots for pain. Has anyone else had this that you know of and have anyone done Botox shots for pain? Does it really work? Would appreciate any feedback.
Much Love and Blessings,
Crystal
ohh crystal.
you should never feel like that, there are so many people that do not understand about the struggle that comes with chronic pain,
this is a daily issue and should never make you feel as through its anything else, Food may make us feel better for awhile but is only a tempoary fix, but then face other issues with that,
you are important, and you deserve to be heard,
you need to vent and never say sorry for that, We are all here for you, we understand it, breath it, live it,
im sorry that having a long sleep didnt make you feel better,
you are a strong women, you are able to face whats ahead,
my thoughts are with you
joelene
Hi Crystal well funny to be reading your storey I’m going through the same thing some days not eating at all to nauseated then I can’t sleep then eating well I eat too much after a day of not wanting anything to eat,. At least we are all here for each other us fellow chiarians Im so glad I found this site, It makes me feel human still, Having a rant on here is good because yes I do believe people in our familys get sick and tired of hearing how much pain we are in or how nauseated we r etc…xxoo varnz
varnya,
well spoken, this site gave me the gift of life again, i felt doomed and alone, then i came across this site, my life changed for the better,
yes we do feel human with there is understanding, no judgement, life becomes just that little bit better.
joelene
I hope your doing ok…
Thats one thing I hate about doctors they can’t just give you answer. They just wanna drag it out thinking you will forget and not bother anymore. at least thats mine did… I think most docs are the same except for them rare few.
Don’t let them keep fighting… I learned that as long as I argued my case for myself and not expect docs to do a thing they listen… Sort off. Lol…
The botox is something I am asking about atm… Apparently they do it in a halo around your head something like 36 injections over 3 months or something :S… And it paralyses the muscles and stops 70% of pain in the neck… I don’t know how it works where you are but here you have had to keep a headache diary for 6+months and then have an appt to even be consided… If it works I would deffintley try it… Rather than popping yourseld full of tablets that we all know don’t work half the time…
Hoping your ok sending some <3
Lexi xx
i also heard botox, i think i read it someone where in my researching,
maybe something to look at
Crystal,
I have been wondering where you have been. Now I know - you haven't been feeling well. I am sorry that I didn't see this post earlier. I hope and pray that by now you have had a break in your pain. I take Mobic, too, and I don't think it does much to help me either. Don't be afraid to take pain meds when you need them though. If you truly need them and don't abuse them, you won't become dependent. Does your husband help at all with the boys? Maybe the doctor needs to tell your family that you just cannot do it all anymore. Even if you do have to have surgery on the discs it is more than likely still a part of your Chiari. We all understand that your friends and family don't understand. It seems that people that do not experience chronic pain, really just do not understand. You can always vent to us here! We want to support you whenever possible. Please keep me posted on what your doctor says. Which discs are causing you trouble? I had a fusion of C5 & C6. The surgery was simple and I didn't have any trouble with it at all. It was 11 months after my decompression.
Take care,
Carla
I will do Abby if I ever get to see my doctor again. I been having a hard time lately.
They don't associate my sypmtoms with my Chiari. They just tell me to lose weight and all my problems will be solved... I've already lost a stone and it hasn't helped. And everyone telling me that my face looks horrible for it. I was meant to be a big girl at 5'10/11 its hard to look stick thin.
So everytime my doctor says this it annoys me. I don't have any other health problems and yet all of a sudden my weight is a problem. Pfft excuses. I mean I could probally tone up a bit but that is not the point lol.. :P xoxoxoxo
Lexi,
How are we suppose to exercise and lose weight when we can barely move without pain! We also take medications that CAUSE weight gain! I think it is time for you to switch to another doctor!
Love,
Carla
Me too Carla…
I want to change Neuro and GP as they are just both crap… I never get to see the same GP when ever I go and I only just got an appt the other day to get more painkillers on prescription as they kept forbing me off to get branded ones when I told them I know which ones work and they only avalible on prescrition.
Had enough. I have a enough troubles in my life with looking for work. Trying to stay active when my head hurts 95% of the time and all whilst doing it with a smile on my face. I really could just do with a decent doctor.
Thank you Carla.
<3 xoxo
oh lexi
thats horrible, weight is not an issue here, they fill in the gaps where they dont know, i think its crap,
get another doc on board with you, and then i hope changes happening
joelene
Hi Everyone,
Thanks for all of your concern. I really appreciate that each of you KNOW what I am going through and you truely have sympothy for me. Going to start another round of roids for my shoulder and started PT again today. I have been going to the gym everyday since Friday (taking off the weekends) and I really love it. I take aquatic aerobics and find that while I am in the pool I feel like a new person. Lexi, I was told for years that all of my issues were due to me being over weight. Not true. Eversince I hasd surgery I feel wonderful, except for my right shoulder and arm. So, you really do need another Dr. I have been researching Botox, but I am scared to do it and have it not work or make things worse. Please if anyone has any suggestions I would be happy to hear them. I also wish I were a Barbie. Having her looks and body. Not only a perfect curvey silouette, but the ability to remove my arms and legs would come in really handy today. (LOL) Really in alot of pain today.
Much Love and Blessings,
Crystal
HI GANG....
Too funny...when doctors don't know what the hell is the matter with us they blame it on weight!!!!! I was told by a gastro yrs ago that if I gained 10-20lbs...i would no longer have belly pains and trouble urinating!!!! FINALLY..I went to my GYN and she wanted to do a diagnostic laporoscopy....well....she had to in another surgeon for back up b/c it was taking so long.....ended up I had tons of scar tissue on my bladder, attached to both ovaries, atttached to my appendix....once healed from that..NEVER another problem!! So your damned of your a bit over weight and your damned if you a little skinny....As far as the Chiari ..in the very beginning of the symptoms ..my PCP actually said he thought it if I had more weight on my symptoms would be better...this was b4 the brain MRI...
We can't win with some of these doctors!!LOL..
Blessings,
Lori
I am so sorry that you are having so much pain. I have a lot of pain too, and doctors that can't figure out what to do to help. I just drove to Colorado to see a doctor and he really had no clue what to tell me. It is so hard when they say well you should feel fine! I hope that you find some relife! I hate Chiari and what it does to so many nice people. This is a great place to vent and not be judged! We all get that the pain is just too much some time! We are all here to talk when you need us! May you have a blessed day, and thank you for sharing your feelings! :0)