Recently I've been experiencing some pretty intense joint pain and muscle pain. It's mostly effecting my arms and legs. Even my fingers hurt. This usually gets worse in the evening when I'm trying to get to sleep, but its with me throughout the day as well. My question is, is this a Chiari issue or perhaps something else? Seems to have started up since my unfortunate trip to the ER last week. I have an appointment with my PCP on Tuesday and I'm nit sure if this is something I should mention to him or save for my NS during my next visit, if I can stand it that long.
Also, I have an update to my terrible ER experience I wrote about last week. My advice is that if you feel you have been mistreated, don't let it go and contact the patient advocate for the hospital. We started with her, and ended up getting a call from both the director of the hospital and the head of the ER department (she was contacted while on vacation and took the time to call us back). They all apologized for how I was treated and got the names of the dr's who "treated" me and were doing a full investigation. The head of the ER told me to go back and if they did not take me seriously or at least attempt to consult with my NS, I was to give the Dr. her name and phone number and ask them if they would like me to call her for them. Lol, I don't think it will come to that, but when I spoke with the patient advocate and she asked what she could do, I told her that there are many patients in my area who suffer with this and are too afraid to come to the ER because of how we are dismissed and poorly treated. I told her that if nothing more comes of this my main request would be for them to require their ER Dr's to attend a conference on how to treat and what to look for in patients with Cm1 so we don't get dismissed and treated like seekers. So, in conclusion, I may have had a terrible experience, but at least I feel that my voice was heard and I did my small part to raise awareness.We need to have or voices heard! My NS has scheduled an MRI with anaesthesia for the 16th of Aug. and I guess I will soon have answers as to whether or not I have a tethered cord. Figngers crossed that I don't .
:-) Thank you for all of your support. You are all amazing! Take care:-)
Beeba, I'm not sure if I'm hyper mobile or how that's determined, but my knees and elbows seem to go back farther than the normal person. For instance when i walk and my knee comes back(straight), it goes further back than normal people and they constantly get stuck and I have to crack it alot. It does it all the time and grosses my kids out to no end, lol. As far as dislocations, I played tennis for many years when I was young and I can remember dislocating my knee cap at least three times in high school. However, tennis can be very hard on the knees which is why, i've been told, I'm having such a hard time with my knees now. The only other thing I can think of is I've always had trouble with my ankles. When I was 7yrs old I took off down a black diamond run in Colorado, crashed and somehow managed to sprain my ankle in a ski boot. The medics at the resort said it was virtually impossible to do that in a ski boot. Since then I've had nothing but trouble with my ankle and can't wear heels anymore. I'm not sure if any of this sounds like hyper mobile or EDS. How does someone get tested for EDS?
Beeba said:
Reading this I know my gal Abby is going to post a very informative article about ehlers dahnlos. But I thought perhaps you could do some research before so you can have some idea of what she is talking about and why this has come to my mind and why I know it will come to hers. Are you at all hyper mobile or have you had any dislocations?
I agree strongly with the steps you took after your experience in the er!! You may be the Erin brokovich of chiari!! Lol I am very happy and impressed that they took your concerns and experience seriously. Good for you. When you feel bad you should not have the added stress of being scared to go seek treatment. May I ask why you are having anesthesia for an MRI? I get being sedated ;-P it does stink but other than kids I have not heard of being put out - but that really doesn't mean anything. Hope you are feeling better.
To answer your question about anesthesia for the MRI, my back pain has gotten much worse since the last time I had an MRI and they had to pull me out of the machine 3 times to place pillows under me in an attempt to make me comfortable due to the horrible pain in my back I was having difficulty laying still. I have not been able to sleep laying down in almost two and a half years, I've been sleeping sitting up on my couch because its the only way I can get comfortable. When I have to lay flat on my back it has become nearly impossible to lay still, as they quickly found out last week at the ER, so my NS ordered anesthesia. Seemed a bit drastic to me also, but her nurse told me that it is quite common for their patients like me who are experiencing such bad back pain. She said they actually find it unusual for a patient who they suspect may have a tethered cord to be abke to lay still for the MRI.
Beeba said:
Reading this I know my gal Abby is going to post a very informative article about ehlers dahnlos. But I thought perhaps you could do some research before so you can have some idea of what she is talking about and why this has come to my mind and why I know it will come to hers. Are you at all hyper mobile or have you had any dislocations?
I agree strongly with the steps you took after your experience in the er!! You may be the Erin brokovich of chiari!! Lol I am very happy and impressed that they took your concerns and experience seriously. Good for you. When you feel bad you should not have the added stress of being scared to go seek treatment. May I ask why you are having anesthesia for an MRI? I get being sedated ;-P it does stink but other than kids I have not heard of being put out - but that really doesn't mean anything. Hope you are feeling better.
Emmaline, thanks for your response. I will definately be looking into diet. I'm currently taking magnesium supplements as well as potassium, but I'll add some fish oil to that and watch my gluten intake. At this point I would be willing to try anything. As far as the ER disaster from last week, I have to give most of the credit to my Husband for that one. He was the one who found the info on who to speak to and didn't give up until he got the right people to listen. I was only contacted by the patient advocate person so she could get my input on how they could help. I was too drained and in too much pain to fight for myself at the time, so he is my true hero. From what I hear though, things are being done at that hospital and they have actually taken this seriously. Which makes me feel so good. So the moral of this story is, we have to speak up for ourselves so we do have a voice! We just have to talk to the right people to bring awareness so we will no longer be dismissed and ignored! My thanks to all of you for your support, you are all my heros:)
Emmaline said:
Inflammation can originate from so many sources for a chronically ill person. Diet has to be looked into, some foods can be big triggers. Gluten can be a big one. Fish oil can help, magnesium supplements, getting enough Vit D.
Certainly we have to rule out other illnesses. Check out EDS. Congrats on your case getting looked into and being addressed! Yay!
Thanks for the info Beeba. Yes , I can do most of that with the exception of the tongue thing. What is the name of the bloodtest? Can I ask my PCP to order it for me? If so how should I approach him with it? He's usually pretty willing to do what ever it takes to find answers for me, but he may not know much about this. Thanks for all your help, you're the best:)
Beeba- I sent you a friend request because I could not comment back without doing so. As far as approaching this with my NS, I definitely do not want to come off looking any crazier than I already feel, lol. So I will approach it as my own research and concerns, and hopefully she is willing to look into it.
Beeba said:
Kristi - I am afraid this one is a bit more complicated than just a standard normal blood test. You need to find someone in genetics. In general with a positive Beighton scale test - go ahead and assume you probably have it. Not like diabetes or something you can do for it. But if you are pre surgery please make sure for THAT you do find out first. It can change how surgery is preformed or if it will be beneficial. Your ns may be your first stop. I would point out all you have said here. There are some ns who actually sub specialty with it. Dr Henderson in Bethesda for one. If dr says we will not worry about that or deal with it later please put the brakes on. I am hoping you are seeing someone well versed. When I say go with the assumption I do not mean go crazy - but if you were to have stitches ask for smaller ones and double stitch. Those are the precautions I want you to be aware of. Who is your ns? I believe you are saying it is a woman and the name I am thinking is a good one. (If it is who I think it is) and do us both a favor - don't go in saying beeba from my support group diagnosed me!! Talk about get treating like a crazy person!! Lol but point out that you have been researching and you think this is a possibility. There are a lot of test that they check for as there are a bunch of different forms. Please google ehlers dahnlos and go do a bit of research. Eds=chiari=dysautonomia The leg bone connected to the hip bone theory. If you have any questions I will give it my best shot.