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is it normal for symptoms to worsten?
I was diagnosed with chiari malformation in January of this year after being put on many pain meds and finally convincing my doctor to send me for a scan. I was just wondering if anyones sysmptoms get worse? I turned 20 in February and I'm feeling like a 80 year old woman at the moment. Before I was diagnosed it was just the daily headache however now ive had back pain, legs going spontaneously numb, my arm and hands being numb and dead with pins and needles (not constant) as well as the headache still and difficulty lifting my head due to it being so heavy. I haven't been able to do things I normally do like spend the day doing anything - a day shopping, a day at the beach, taking my dogs for a walk - due to the headache becoming pounding after any exertion, my thighs cramping, my back hurting, feeling neaseous etc. I was just wondering if its normal for the symptoms to get worse so quickly and how long it took for the neurologist/doctor to actually take how you were feeling seriously?
Yes, my symptoms were that I had to take contract jobs, then eventually work PT from home. Crawling from bed to bath was normal. Chiari docs weren’t of much help. I treated symptoms: TMJ, sleep apnea, water retention, stretching, weight training, NO pain meds (I really think that these are a major contribution to issues), low cholesterol diet, so much more. I have my bad days, but seldom! It’s learning tour body and to make up for its deficiencies. I have impressed many docs with how well I’m going.
Just reading you post nauseates me ... It brings my miserable pain memory back. I've not experienced it to your degree in almost 13 years (now 53). I've never felt better. Acid free diet, walking, minimize stress (I've REALLY limited seeing family that stresses me out), get treated for TMJ (this was MAJOR for me!), weight lift, start with trainer with degree & medical courses (they're out there!) that understand conditions. I DO NOT do any pain meds, except for ibuprofen around PMS time. I pray a lot. :D I'm also back to mountain bike riding (low and medium trails and hills of course). Who'd of thought?!?!
I feel for your suffering, I remember it all too well.
I feel for your suffering, I remember it all too well.
9 Comments
Just reading your posts, I am new to this board. I was diagnosed about 10 years ago. Had a lot of crazy symptoms when I was first diagnosed. Then all of a sudden they all started to disappear. I went about 8 or 9 years pretty much symptom free. Except for the occasional neck tightness and breathing issue to where I can't take a full breath. I worked out, rode bikes and was very active. Now, I am going to be 52 and ever since In December I got a cold and bad congestion for a month and a half, my breathing issue has not gone away. And had one day where I thought I was going to pass out. I still have not recovered fully from that and still have to yawn sometimes to get that full breath. Can this go away again or is this what is called the progression? I didn't do anything to bring this on but am really praying that taking it easy this will go away again like before. I now have feel like I have a lump in my throat sometimes too. so weird. never had this before and too boot, there are no specialists here in VA that I can go too. I just keep praying I will wake up and I will feel normal again. I am so scared right now
Hi and welcome to the Chiari forum.
Things like a cold or flu can trigger symptoms to flare....and could be what you are experiencing....AND symptoms cycle so, that means they can come and go for long or short periods of time.....even if you didn't seem to have symptoms that really affected you, they may have been there all along but one day, a cold, flu or sometimes a cough can trigger symptoms to flare and then you really notice.....
Since the symptoms cycle it is possible for these issues to calm down or go away, but there is no way to know how long it may take.......
Have you been tested for related conditions?
Things like a cold or flu can trigger symptoms to flare....and could be what you are experiencing....AND symptoms cycle so, that means they can come and go for long or short periods of time.....even if you didn't seem to have symptoms that really affected you, they may have been there all along but one day, a cold, flu or sometimes a cough can trigger symptoms to flare and then you really notice.....
Since the symptoms cycle it is possible for these issues to calm down or go away, but there is no way to know how long it may take.......
Have you been tested for related conditions?
I’ve also noticed during PMS, symptoms are 10fold. Immunity system drops. Flu can turn into weeks, I’m very careful around flue season and summer old season. Eat clean and build up immunity system.
I have not been tested for related conditions lately. About 2 years ago I did have a lung work up and it all looked normal. There are no Chiari specialists in VA so the only thing I did also 2 years ago was see a NS who said has done decompression surgery's but not Chiari known Dr. and had a CINE MRI done and he said my spinal fluid was fine and was not a candidate for surgery. I just feel like I don't know what to do.
New symptoms are also occurring. Im freaking out. It's all respiratory and my throat feels like I have a lump in it as well.
Lump in throat feelin is common symptom. It’s Often swollen glands. Make mention of this to your primary at next doc visit.
I will, but the lump in my throat is only when I am experiencing my breathing issue. Last night was so bad. I woke up like 4 am and had respiratory issues for like a half hour. I finally just kept putting Peppermint oil on my chest and around my nose and laid down with a fan blowing in my face and tried to relax until my breathing stabilized. I am wondering if I should go to get a new MRI to see if any changes. The last one I had was in 2009. I had a CINE about 2 years ago and there was no blockage of spinal fluid. I have to figure out how to come up with money to see an out of state specialist. The anxiety I have right now is over the top. I just want my normal life back! I was fine a week ago :(
Sounds like you need testing again, whenever symptoms flare/change you need to be checked to see if anything has changed. Along with the testing for Chiari testing for related conditions should be done as well as they could be the reason for the symptoms even if the Chiari is not.
Sounds like you need testing again, whenever symptoms flare/change you need to be checked to see if anything has changed. Along with the testing for Chiari testing for related conditions should be done as well as they could be the reason for the symptoms even if the Chiari is not.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Yes, symptoms can worsen and there can be several reasons why......it can be your activities, or if you had a fall or even a cold or the flu......sometimes there is no reason.
Knowing if you have any of the related conditions can also help undersstand symptoms and how and when they change.....Chiari's symptoms cycle...they come and go, so they worsen then can seem to disappear then come back and hit hard....
Educate yourself on Chiari and ALL related conditions and research Drs......
Ask questions until you understand....then ask more.
Yes, symptoms can worsen and there can be several reasons why......it can be your activities, or if you had a fall or even a cold or the flu......sometimes there is no reason.
Knowing if you have any of the related conditions can also help undersstand symptoms and how and when they change.....Chiari's symptoms cycle...they come and go, so they worsen then can seem to disappear then come back and hit hard....
Educate yourself on Chiari and ALL related conditions and research Drs......
Ask questions until you understand....then ask more.
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