MDJunction - People Helping People
 
Ask a Question
09/17/2011 04:42 PM

i dont know how to handle this anymore

alonensidemyhead
alonensidemyhead  
Posts: 17
Member

i was diagnosed with fibromyalgia 8 years ago, when i was 16. when i was 17 i started having symptoms that they told me were a pinched nerve in my lower right back. a couple years later i noticed i felt a pinched nerve feeling in my right shoulder blade. over time, it spread to my left side as well. a year ago, i started having pain/sensations in my tailbone. this was the start of what is my biggest problem today. over the past year, the pain and sensations have spread up my spine. pain, tingling, pins and needles, numbness. you name it, i feel it. my toes go numb just from the pressure of the ground, my hands and fingers go numb while im sleeping. i get this sensation that i am being electricuted and it wakes me up, giving me this uneasy on a boat feeling or like theres an earthquake, but its just in my body. if i cross my legs and lean forward in a sitting position, my body starts to sway back and fourth gently, like literally moves itself. i cant sit, stand, lay without tingling or numbness and pain somewhere. the past two weeks it has progressed the fastest anything has ever progressed. i have tingling now in every part of my body, even into my neck into my face. my eyes hurt so bad it feels like they have a pinched nerve of their own. ive been wearing a lumbar spine support brace for a while, the doctors just gave me a new one that im supposed to wear all the time but it has been (im assuming its the brace) been causing so much abdominal pain. my whole stomach area hurts and aches and even woke me up last night. i am so miserable and uncomfortable. this is on top of my regular fibromyalgia pain, i also suffer from tmj/tmd which is really painful as well. when i was diagnosed with fibromyalgia, i was diagnosed quickly and sometimes i get scared they didnt rule out anything else. although im certain i have it, with these electricuting sensations, i am always scared of multiple sclerosis. or i am scared that it is some sort of serious nerve disorder making unfixable damage. i have no insurance so i go through the county now. not only have i had my share of doctors who dont care, but ive also had my share of doctors who immediately brush me off because i say i have fibromyalgia. they also judge me because i have scars on my arm from when i used to harm myself as a teen. i feel like an outcast that doesnt matter. sometimes i just feel embarassed or ashamed to say i have fibromyalgia or be who i am, in the pain i am in. or it just makes me feel crazy. it took a year to get my orthopedic appt last month which led to my full spine mri. the results are ready but because its through the county, i have to wait another month for my appointment to get the results. the orthopedist cant refer me to the neurologist so when i saw my new regular dr last month i told her and i feel she was overwhelmed with all my symptoms so im not even sure she put the referral in. we are playing phone tag for me to find out. she said she would refer me to a pain specialist once i came back and brought my mri results. that appointment isnt for 2 more months. this is all so draining and hard. ive never felt so alone or disabled or sick in my life. normally i am so strong and keep it together well even without having help or support but this tingling crap and feeling so wiped out is tearing me down. i go to school full time, all online except my painting class which is my one outlet in the world and i cant even do that, ive missed three weeks because of my spine. i dont want to die but i want this to stop so bad that i feel it is just sucking all the life out of me. i love life and i always try to find the beauty in everything and i just feel this is taking away everything ive got left inside of me. i need help. i need support. i cant do this alone. i can hardly handle this just in general. i pray every day and nothing changes, i feel like im just at my breaking point.
Reply

09/17/2011 05:07 PM
sunnydays
sunnydays  
Posts: 637
Member

Hello and welcome!! First,you mention MS. Have they done an MRI of your brain,or a lumbar puncture? MRI of the brain is the main way they rule out MS,and sometimes a lumbar puncture. FM and MS have many similar symptoms. If these tests have not been done,I would insist on it. Also,are you taking any meds? I would call these Drs offices,and ask to be put on a cancelation list,or insist on being seen sooner. If you do have something herniated in your spine,it could also be causing some of these issues.

If everything else is ruled out,and the FM diagnosis stands,then I suggest seeing a Rhumatologist,or Pain Specialist. You need to keep going to Drs. until you find one that is willing to help. They are out there,sometimes just hard to find. Im so sorry you are going through this,I know how bad the pain can be. You must advocate for yourself though,and keep pushing until you find the right Dr. and meds/therapy that work for you! This is a great group of people here,and I hope you find this group to be helpful and supportive. Please feel free to jump right in!!


09/17/2011 05:25 PM
Raoul
RaoulPosts: 4221
VIP Member

Hi Hun

I read all of the above descriptions -

I would like to suggest you sleep with a regular pillow under your knees and sleep on your back. If you shift to sleeping sidewise try to ge tthe pillow between the knees.

Also try to sleep with a feather pillow under your head and shoulders.

Give the pillows about a week to see if they help you any.

Hope it helps, Hugs, Raoul


09/17/2011 07:00 PM
mabri
mabri  
Posts: 4770
VIP Member

Alone,

Just so you know, you are not alone. We are here to listen, make suggestions, and support you through this. I know you are having some serious issues, and Sunny is right. You need to call the county, or the dr or whoever, and tell them that you cannot wait 1 or 2 months to see the dr. Sometimes you have a get a little cranky to get what you need. It's unfortunate that that's the way it works, but sometimes it is. Be assertive and don't take no for an answer. When you say you have to go through the county, does that mean you are on medicaid?

Give them a call, and then let us know how it went. There may be some other resources for help if calling them doesn't help. We are a family here, and you are now part of our family.


09/17/2011 07:19 PM
maryandjimmie
maryandjimmie  
Posts: 1849
VIP Member
I'm an Advocate

Alone, welcome to the group I trully know how you feel. I will say until I started to get mad the drs didnt do nothing for me. Sometimes it takes for them to know you are serious for them to do somthing. I understand being woke up in pain and the tingling and electricity in your body. What helps me is the feather pillow for my head and sleeping with a pillow between my knees thats the only way I can sleep and on my back. We are always here for you and always feel free to pm me anytime.

Hugs Mary


09/17/2011 08:48 PM
bc1028
bc1028  
Posts: 3383
Senior Member

I am so sorry you are going through all of this, let me say, I do have fm but I also have back issues and have had surgery for it. I have nerve damage and it does cause some of the problems you are explaining. I know your appointment is not for a month or so but please call your mds office and tell them you need to know something that you are still experiencing severe problems and need to find out something. It is so frustrating when you know something is wrong but you keep getting the run around.

In the meantime, if the meds they gave you does not help, see if they can give you something else until they can get an accurate dx. Good luck, I know that kind of pain is unbearable and hope you get some relief soon.


09/18/2011 07:42 AM
Nitalynn
Nitalynn  
Posts: 1404
Senior Member

Welcome to the group. Are you on any meds at all? There are some medication interactions that can be pretty gruesome and you sound a lot like me when I was suffering from serotonin syndrome. It also doesn't sound like you are being monitored very well either so it makes me wonder.

09/18/2011 03:08 PM
faieriemama
faieriemama  
Posts: 3346
VIP Member
I'm an Advocate

Dear alone I feel the pain you are in darlin' I was there not so long ago my self. No insurance, no meds, no one to listen to me. Well you're not alone any longer honey you have all of us here to listen to you and support you. Some of my best and dearest friends are here and this is where I go first when I need to talk to someone hope fully this becomes that place for you. You mentioned that you have to go to the county now does that mean you have medical through you local social health services office? Have you checked out other county programs that might be able to help you? I will keep you in my thoughts and prayers please keep us updated on how things are going for you.

09/22/2011 06:07 PM
alonensidemyhead
alonensidemyhead  
Posts: 17
Member



Post edited by: alonensidemyhead, at: 09/22/2011 06:08 PM

09/22/2011 06:08 PM
alonensidemyhead
alonensidemyhead  
Posts: 17
Member

First I just want to thank everyone for their help and support. Im going to address everything at once to make it easier. I have been scared of MS for a while now, but I am not sure how to bring this up to doctors. I used to speak up more than I do now but stopped after one doctor at a walk in clinic called my list of symptoms a "grocery list" and refused to look at it. He triggered a total anxiety attack by being so rude to me and made me cry (which I like never cry so it was pretty bad), after that I have felt very scared to say anything to doctors, feeling like they just dont care. Now that I am getting into specialists, I find it will be easier if they do not bring this up for me to question them myself. My orthopedist told me I need to see a neurologist (because of my balance and coordination problems, which are getting rapidly worse since I saw him) and that they would be who would take the brain MRI scan. I just got ORSA. Its like an out patient reduced cost type of thing through the county. They cover me only at specific clinics in LA county. Appointments take 3 months minimum to get into a regular doctor and specialist referrals take a long time. It took me a year just to get into an ENT, and this orthopedist took 7 months. My regular doctor said once I received my full spine MRI results and brought them back with me to my next appointment she then would refer me to a pain specialist (only god knows how long that referral will take). I dont know why she wanted to wait given I have been in chronic pain for 8 years, but yeah. I do sleep on my back and do put a pillow underneath and between my legs, I had to figure that out the hard way but it does help, just not enough unfortunetely. Thank you for that advice. I will give my orthopedist office another call, but I have already asked if they allow walk in's because Im more than willing to wait all day for this and they said no. Their cancellations open up room for other walk in's that are allowed, which consists of only those with a broken bone. Thank you Mary for your kind words. BC1028, it is emotionally draining when something is wrong and everyone else is minimizing something that feels like it is consuming and taking away your life. I feel like I have picked up their habits over time and begun minimizing it myself. I feel like I have detached my mental/emotional state from my physical state. I feel like I have begun to minimize my own pain myself because I feel there is not much I can do other than wait, or just suffer, so I myself try to just ignore it or get by until I can get someone who will do the right tests and help. Nitalynn, when you brought up drug interactions I will admit it worried me! They are not monitoring me well, they aren't monitoring me at all. I was taking Naproxen 220mg 3 pills a day, 2 in the morning 1 at night. I was also taking acetiminophen 500mg x4 pills a day, 2 in the morning 2 at night. I also took robaxin 500mg two times a day. Then I have hydrochlorothiazide 12.5mg daily that I just started a month ago for my blood pressure, its always been in hypertension since I was about 17 but no one ever put me on meds for it. The rest of what I take is vitamins. I take super b complex, glucosamine with msm, vitamin d, calcium, a multivitamin and I was taking sam-e for a while. When you said it could be a drug interaction, I decided I would not take these pills and see how I felt. The spine stuff and tingling and swaying/imbalance is not any better but I don't feel too much worse. I also feel like I am having less muscle spasms but not sure if this could be because I have been laying down more since I stopped. I dont care for meds much, I usually just have to take them around the clock because of my TMJ, without them my jaw hurts extremelyyyy bad but I am managing so I will continue to try and avoid these meds until I can talk to a doctor about this. Again, I appreciate all of your kind words and support. It feels lonely in this big world that feels like no one else understands. Currently I am coming down with something, I always take all the necessary precautions to not get sick (from germs) but my grandmother is sick and now I am getting it. I am emotionally overwhelmed, I am not even full blown sick yet and I am just pissed off, frustrated, I feel so upset. People just dont understand how hard it is to get sick when you are sick. My balance has been getting so bad. If I try to stand still I sway now. I almost feel like one of those bobble heads, but like a bobble body! This swaying/almost dizzy feeling of my body is really freaking me out. I am going to try and get into an urgent care place where my insurance covers me and if they can't help then I guess I must go to a hospital. Getting sick on top of this isn't something I, or my body, can handle. Anyways thank you again everyone I appreciate it more than I can express.
Reply

Share this discussion with your friends:
<< Start < Prev 1 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved