Its a late night for me. I cant sleep. I have so much guilt about my Chiari diagnosis. I have felt sickly, headachey, and dizzy for many many years, and finding out last December was a relief to finally know that I am not crazy....but it has been a burden also. I talk about my symptoms non stop....which was a relief to do because I always made up other excuses for how I felt or why I couldnt do things, blaming other issues because no one thought I was legitimately sick. I cant complain of feeling bad all of the time because no doctor could tell me what was wrong....so everyone thought I was a hypochondriac and I started to think so myself. My husband and I havent quite been married a year, and he struggles with believing how bad off I really am. His mother flat out attacked me yesterday, calling me a liar and saying that no one can progressively get worse like I have been. She has called me selfish for getting pregnant and blames me for putting so much stress on my husband. I lost my Job in June of 2012 due to my inability to do my job, and from being sick too often. I was forgetting things, and started having issues with being able to concentrate. Then 6 months later I get my diagnosis. I filed for disability because of my inability to take care of my home, and sometimes I cant even drive because I am so dizzy. I feel so alone. I have an opportunity to be a stay at home mom, and I cant even do simple things without my symptoms affecting my life. I rarely go out, if I do I end up getting ill and leaving early....I have been relying on family to help me with household chores and picking up the kids when I am unable to drive. I feel like a failure. I have so much guilt about this condition. People just don't believe me. Here I have a diagnosis and I don't have to hide anymore, and I have permission and a real reason to feel bad.....but I am questioned about how I am "really" feeling. I am at a loss!!!!
Hi I am so sorry you feel as bad as you do but you are not alone we are all here to support you at least mentally.My symptoms to have rapidly become worse over the last 9 months up untill then I worked in a busy gp surgery even assisting with minor surgery.you need the love and support of all your family at this time but you have to stop blaming yourself you don’t possess a crystal ball so how were you to know how your condition would deteriate.perhaps you could show your family this site?only yesterday I wrote down my symptoms it is very scary when you see it in print .yes it is a horrible condition and none of us know what we have in store but listen to the proffesionals and take their advice on the treatments available and take strenghth from the group we are here we understand and you are NEVER ALONE take care xxxxxxxxxxx
I'm sorry your are feeling so down! Acceptance of this or any illness is very hard on you and can be on your family too. Has your husband been to any of your doctors appointments with you? If not maybe he needs to go so the doctor can explain CM to him. Does your husband know what his mom has said to you? He should tell her not to speak to you like that. She is just making you more stressed out by trying to put a guilt trip on you. Do you have any other family members there?
This illness is not your fault! You are not a failure and you have nothing to feel guilty about. It is not like you chose to become ill! Just know that you are not alone, we are all here for you.
SparkyID7
Oh my gosh....you sound like me! You are NOT alone in this, even though it feels that way! For years, I would get "talked to" at work because of how many days I would miss for being sick. For years, everyone would sigh and roll their eyes when I said I had a headache or my back hurt or that I was soooooo tired. Everyone else would say, "well, so are we. People get headaches/backaches/fatigue". I always felt as though they thought I was just a big baby.
When I got my diagnosis, I swear I heard the angels sing! FINALLY, I had a real reason for the way I had been feeling. Now when someone asks how I am feeling or what's wrong with me, I really tell them!
I do feel horrible when my boys want me to come outside and play tetherball or get in the pool with them and all I can do is go to bed because I'm either too tired or I hurt too badly. My poor husband doesn't get as lucky as he used to because I'm usually asleep before he is. When he's in a bad mood, he'll say something about the house not being cleaned that day or not all the clothes got washed.....I just lie in bed and cry.
My neurologist prescribed Provigil for my fatigue and Lexopro (?) for the depression that comes along with this. I haven't picked up the prescriptions yet because they are very expensive and we don't have insurance yet. I am praying that the depression med will help with my mood swings.......PLEASE let it help!!
My opinion? You need to take your husband with you to your next neuro appt and have your doctor explain to him what you're going through and what he needs to do to be supportive. Hell, you might take your MIL, you never know. Maybe hearing it from the actual doctor might bring them around. Either way, you do need to tell your neuro how you're feeling physically as well as emotionally. Our emotional well-being is just as important.
I hope you can find the strength to keep fighting through this. Never stop until your questions are answered.
You are not alone. Feel free to message me any time! :-)
~Mariah
I am so glad you posted your frustration. You are not alone and their is strength in knowing that. My son is just shy of 18 and was Just diagnosed this past May. He has been suffering with headaches/fatigue/bowel issues for a long time now and both my family and my husbands family would make comments that he just wants attention for something stupid along those lines. When we finally got a diagnosis I found this website and in the resource section there are many links with printed literature about the condition. I printed several articles and passed them out to all of our family. It really helped them understand that CM is a real condition and my son is not just over reacting. Now they understand. I hope this helps. Hang in there and never feel alone, we are all here for you.
Good Luck
Charlene
Has your son been checked for EDS ? I was diagnosed with Chiari in 09' and had bowel and a few knee dislocations and I have extreme fatigue. I saw a doctor and she diagnosed EDS and Dysautonomia . I am now managing all three . its still a struggle but at least I now know what to do .
charsay3 said:
I am so glad you posted your frustration. You are not alone and their is strength in knowing that. My son is just shy of 18 and was Just diagnosed this past May. He has been suffering with headaches/fatigue/bowel issues for a long time now and both my family and my husbands family would make comments that he just wants attention for something stupid along those lines. When we finally got a diagnosis I found this website and in the resource section there are many links with printed literature about the condition. I printed several articles and passed them out to all of our family. It really helped them understand that CM is a real condition and my son is not just over reacting. Now they understand. I hope this helps. Hang in there and never feel alone, we are all here for you.
Good Luck
Charlene
Educate them, its hard when they cant feel what you do and the doctors have no answers. After 8 years i finally got a diagnosis that required brain surgery that in itself made anyone who thought i was making crap up realize i was not. They do not do brain surgery for just anyone and anything. Try to get them to read the online articles, this forum if it helps, brochures go to your doctors appts with you etc.. Hang in their baby girl we have all been there. Have they decided on surgery for you are you still getting testing done?
Hugs no one should feel the way you do, surgery helps relieve symptoms and for some they never come back but i have been told its not a cure and this is a life long disease. I hope your family can get on board of supporting you. Being well mentally is just as important to get thru whats ahead. You have a huge support here please use it often it will show you how not alone you are:)
Lucky Charmz,
You are not alone. We all understand. Have your Mother in Law join this Forum, I am sure she would get an education and not a friendly welcome. It is hard for our loved ones to understand but no one should attack you. She just doesn't understand and is blaming you for something you can't control. Please know we are here for you and your family. I am so sorry you are having to deal with your Mother in Law on top of everything else.
My dear chiarian friend. I am so glad that you posted your feelings about what your dealing with. I truly feel alot of people are not going to understand but we do. Everything you described is so real with this condition. I personally spent 6 1/2 years and mannny doctors who just couldnt figure it out. Im glad im pretty stubborn and determined to find a diagnosis. just try to remember that we here totally get what your going through. I just hope I helped you alittle.
Thank you for the honesty. I am in denial that I really do have the same feelings as you. My circumstances are different, but I am glad I read your post, because I have to admit I do have glimpses of guilt & fear of the future. Your story gives me hope! Hope that we can support one another due to the strength of shared experiences. Warmest wishes your way & thank you for your post!
Hello. Please know that you are not alone & you have absolutely NOTHING to feel guilty about. I had & still have some issues with some family members who don't believe me (or rather don't want to) & know how hard it is. It's often easier when people can actually 'see' illness & with CM, the symptoms are not visible as such & one 'looks normal'. What I tried to do is educate people I know, about it. Try & get the family involved & invite them to your appointments where possible...especially your husband. Find literature for them to read so they can educate themselves. Once they do maybe then they will try to understand & see that all of your symptoms are REAL.
Ya know, I had felt dizzy since my 20's and never knew why. I had weird spirratic symptoms as well and was told I am such a hypochondriac also. I found out I had Chiari when I was like 40 because I got slammed with an array of symptoms all at once. Ear ringing and sensitivity, even more dizziness, extremely tired all the time. Especially after work and chores and just life. My symptoms now come and go but I have other ones now too. I know exactly how you feel and you are definitely not alone! This is a great place to come to ask questions and just talk about how you are feeling and actually feel better that you are NOT going crazy. It's hard for people to understand when they have no idea what we go through. You are not a hypochondriac! I actually had a NS tell me that everything I read about CM that other people are going through that I felt too was being caused by my own mind because I was reading about it. Causing my own symptoms. Mind over matter! WHAT?! REALLY? A Doctor told me that! I was mortified!!! So needless to say....I cried a lot!!! Frustrating, but I now know that I am NOT crazy and there are others who know and also Doctors who are out there who are really finding out more about CM and wanting to learn more about our symptoms so we can be treated properly. Because even for them it's a learning experience because our symptoms vary in so many ways and diagnosing us can take a lot of testing before they figure out what it is that we actually have. But don't stress, we know exactly how you feel
Hope you are having a better day today! Keep your chin up and try not to stress. :)
I know exactly what you're going through! I've had all these symptoms for years, the sickly, headaches, and dizzy... I'm still fighting to have a dx of CM or SM. I've had to quit my job because I can no longer do much of anything. The doctors are attributing everything to a cervical fusion I had on my c5-c6 neck in 2010, but I know more is going on - I'm convinced I have CM and possibly a syrinx, and thethered cord syndrome, but every doctor is looking at me as if I'm "crazy." They believe most of my symptoms are from depression and anxiety and want to keep me on antidepressants. I have some paralysis on my right side, from the arm down to my feet. Waiting now to see a neurologist and NS. Like you, I don't want to go outside much or be around people very much, because you know what they are thinking, that you can't be having all these symptoms, it's got to be your head... I'm praying for answers and the right treatment very soon before I lose my mind... Take Care and know you're not alone.
I am in a similar situation. So I get the guilt and frustrations. One thing I did when my kids were little (years before my diagnosis) is what we called cuddle time. We would watch movies or read books (if I was to dizzy to read, we just looked at pictures).
My kids are now 18 & 15 and say they always felt loved and never felt neglected. I still do guilt over my short comings.
Hang in there, do what you can.
Me too... Only I've had this diagnosis since 2003. Unfortunately the neurologist that first diagnosed me is no longer practicing. I've been to 2 others and they just keep pushing pills, pills and more pills... which do nothing. We live in a very rural area and it is hard to find doctors that even know anything about this disease, let alone understand what you are going through.. There is no way a "regular person" can understand. My sister is an RN and even she thinks I'm crazy. The neuropathy in my hands and feet have gotten so bad, it has been really hard to stand/function, so now I've gained about 80 pounds and am feeling truly awful about myself as well. All I can do is tell you that you are NOT alone. Others feel just what you do and we all wish you the best.
Hang in there.
Butteboyzmom
I know how you feel, i was same way for a lot of years, and i still have my moments at times... i self medicated for years just to deal with the pain and the depression.. Its one of the must awful feelings to have the people you care about the most turn their backs on you, or not believe you...
I have very bad neuropathy in my hands and feet as well - the doctors are trying to attribute that to diabetes... I was diagnosed with Type 11 diabetes in 2007. They put me on medication. I took it for a year; and thanking God for the internet, realized I could control this by diet. So I became a vegetarian and to this day I'm no longer considered a diabetic - my sugar levels are perfect. So that theory for my neuropathy pain is "out the window." I know I have CM and possibly more going on as well. I haven't been having much luck these past few months trying to get a proper dx, and I'm not feeling positive about the neurologist and NS that I'm scheduled to see in the next few months. I'm so thankful for the Internet - without it I would not know anything about this disease and would believe everything is "ALL IN MY HEAD." But you never know - God works in mysterious ways... Hang in there girl!!!
That's so true, Ron! I hate taking these medications as well... I have no choice but to take something when I wake early in the mornings with this throbbing pain shooting up the side of my head and in my ear. Take Care!
ron.d said:
I know how you feel, i was same way for a lot of years, and i still have my moments at times... i self medicated for years just to deal with the pain and the depression.. Its one of the must awful feelings to have the people you care about the most turn their backs on you, or not believe you...
I am so sorry you are going through this. I am almost 4 weeks post op and I am slowly seeing symptoms return and I dont feel like I should say anything because everyone around me will not listen this wasnt a cure it was just to slow progression. Please do not feel alone because you are not. I struggle with my depression or as my husband calls it my "moodiness" as well, I deal with anxiety and paranoia too. I came off of all of my meds except for the pain and muscle relaxers the surgeon gave me. Monday I have surgery for skin cancer and while I was in the hospital having my chiari surgery a lump was found in my breast. So I do understand that some days it just seems you cant win. I can only suggest to hold on to those good days keep them in the front of your mind and stay as strong as you can till you have another. :) I will keep you in my thoughts!
Lucky Charms,this is a sickness that leaves us hurt,bewildered,feeling alone but as long as you have your fellow chiarians you’re not alone.Try to focus on those who do understand and shake the others off as idiots that know not what they’re talking about.This is not your problem alone,it is thier ignorance and there’s no cure for stupid!!I feel that God made us this way so Dr.s have us to teach them of this illness,God understands why.I’ve ask Him so many times and then I say,why not me? You are special and you just remember that there are those who make us feel sad and the mental pain is as bad as the physical,everyone of us that gets diagnosed is one step closer to a better understanding of it all.I saw my chiropractor today,to adjust my lower back,and before I left we discussed this thing and he wrote down what I told him and Dr. Rosner’s name,the only specialist in this area.This could be what needs to happen more often even a chiropractor does’nt know about this?Lets stick together and make a difference for others to come,please it’s not your fault this happened to you I will think of you and look for your post we’ll get through this together.