Just a moan....

[Charli90p9]

Hi all. I was diagnosed with Chiari last week. I recieved a letter from my neurologist telling me it was found on my MRI, aswell as wear and tear on my neck. I am yet to speak to him to discuss it properly so I have had to make do with internet research.

I have been suffering with bad pins and needles and pain in my left arm for over a year now. I have had b12 injections and a few nerve conduction tests. My doctor referred me to a neurologist as he couldn't find a reason. The neurologist sent me for MRIs, and then I recieved the letter.

I have 2 physical jobs, 2 young children, 2 dogs, a parrot, boyfriend (of almost 12 years) and a house. I am always busy! Lol. I have started to get other symptoms, but told myself it was nothing and carried on. Now I have had this diagnosis and reading the symptoms I can now see they are linked to it. Work have been great (commercial kitchen assistant). They have put me on light duties and have siad if I start to struggle to let them know. The whole team have been looking out for me. The other job is cleaning. I have yet to see the manager there to tell her, but the lady I work with has been helping me.

My biggest complaint is my boyfriend. Since I have told him he has hardly mentioned it. If I complain abot something hurting he moans at me, saying I'm over reacting because of what I have read on the internet (I was in bed by 8 last night with a really bad head and neck and he moaned at me for it!). I haven't even told him half of what symptoms I have as he makes out like it's all in my head, and that makes me feel worse! Not once have I ever not done something becaus I have been in pain or ill. I have never not had his food ready, never not had the kids sorted, never phoned in sick for work.

I am fed up with feeling like I have no one to talk to. I am worried about what I will be told, I don't want my life to drastically change, although I know it probably will now, but I cannot discuss any of it with him. My friends, well, my best friend hasn't messaged me or anything to ask how I am, and another has asked, but she has alot going on in her personal life right now. Myparents have moved to America so I cannot talk to them about it easily, and we're not really a family that talks about feelings and stuff anyway. So at the moment I am feeling very alone, and just needed a moan. Sorry. Lol.

[selmaS]

  Did you look at the list for the Ann Conroy Trust? They have Drs familiar with Chiari on that list...

So many of us have had Drs that  do not know what Chiari is, and told it is nothing to worry about...but then have no clue what is wrong with us.....so, I know it will be hard and once I had my DX it took a yr b4 I found the right Dr for me....and I saw 3 that were "Chiari specialists" or supposed to be...I doubt  it  for 2 of them....

You will need a lot of patience with this journey.....so just keep on moaning here...lol...and release your stress.

[Frances1011121415]

Experiencing the same reactions. I was diagnosed ten days ago. My family doesn't wanna hear about it. Just, "I hate to hear that, so are you you still gonna do this, then? Bla bla..." My husband has his moments when he wants to be understanding, but he still doesnt understand why this should effect what I'm able to do each day. Even though he knew I felt bad before the diagnosis. The diagnosis isn't enough for him to say , "I'm sry your having rough day, anything I can help you with?" Its more, as I lay on the couch for a quick reprieve after long day, " so, what are you cooking for supper?" Its hard, but I've decided I'm gonna make it more real for him. Gonna finally be completely honest each day about how I feel. Something has to change. We need support so we don't make our situation worse. I hope the beat for you. I guess you and I will go through this learning process together...

[Charli90p9]

Thank you, it helps to moan at people that understand how I feel and have been through similar things.

I understand that he is worried too, it would be nice for him to show a bit of concern/care though. I am trying not to let anything get to me until I have seen the neurologist again, but I have no idea when that will be yet. Then I have read that alot of people struggle to find someone that understands chiari, so then I worry that I will be told it's nothing. I know that if he says that then my boyfriend will agree with him - he is the professional after all - and he will not help or accept me trying to find someone with Chiari experience, especially when we will have to travel a long way to see one.

I just have to wait now. I will give him time to come to terms with what I have been told and I will hope that he becomes a bit more supportive because I really need it.

[selmaS]

  Hi, vent rant, moan all you need to, that is why this forum is here.

Many have the same situation as yourself....but give him time...you were just DX'd and he doesn't understand this....

My husband was the same way and needed time and space to come to terms with what was going on. Men want no they need to protect us and this scares them bcuz they can't protect us from this condition.

Take this one day at a time....slowly he will come around.....it is not fair of us to expect family and friends to understand a condition many Drs feel can not cause us symptoms....BUT I do understand the want/need of a partner, friend or family member to understand and support us...we need that and want that more then anything bcuz we too are scared.

Chiari symptoms cycle and flare...so try to listen to your body so you do not have a flare up of symptoms....ask your BF to join us here....but wait and see when he is ready....and know you are not alone <3