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Giving up

Apr 02, 2015 4:24 PM

Hi I am a 15 year old girl and I have been having terrible weakness on the left side of my body and having really bad back pains for three months now. 2 or 3 days ago my arm has been affected and became weak to the point I can't pick up anything. I have gotten MRI all of that done with contrast but everything was normal. I had a full body MRI of the brain and spinal cord. Because I have been having severe headaches and everything was normal. I am having trouble walking I can't walk on my own. I have been very sick. Been feeling dizzy here lately I have been vomiting and having bad chest pains I went to the hospital and my blood pressure was high then dropped low then went right back normal. My EKG was normal X-ray was normal and I got discharged. Idk where to go from here I have been to a neurologist but seems like he doesn't want anything to do with me. I have been to a orthopedic surgeon and another neurologist idk if it's something with my nerves muscles or joints but I am always in pain. It's worser at night. I can't get out of bed by myself i have to have some type of support to get around. I am just so close to giving up please help me I need to know where to go from here. Even the doctor at the hospital said physical therapy may not help me a lot she doesn't know. I have tried everything. Heat, ice stretches, medications all of it but nothing is helping. Where do I go? I am close to giving up.

Apr 02, 2015 4:51 PM

Taeya15 Hi sugar don't give up there is someone out there that will be able to help you. Have you tried a pain specialist yet. You may need to go to a children's hospital where you live. It can be a hard go for anyone trying to find out what is wrong with them. What is your parents saying about this.

Apr 02, 2015 5:51 PM

Sounds like main stream medicine isn't going to do much more. I think at this point it's going to be you learning to work with your symptoms and keep researching things yourself. Don't be afraid to bring up theories to your doctor.
I suggest going to a chiropractor and trying accupuncture. Sounds to me like you are going to have a long road ahead before you have answers.

Apr 02, 2015 7:59 PM

Taeya, Like Weezie said, go to a children's hospital. You're more likely to come across someone who's familiar with your symptoms. And like Aliya said, try alternative treatments, at least until you get started with answers. Everyone of us have been down a long road and most are still traveling it. None of us have had immediate answers or resolutions. Start keeping a journal of your daily routine; symptoms, treatments, diet, activities, etc. If you research yourself, you may enlighten a doctor(s) of your issues and in turn help yourself and others. Don't give up or give in. Instead accept that it is what it is, but you're going to fight it as much as possible. State of mind is over half the battle in anything. Research symptoms on WebMD, and make a list of possibilities, then research each. Use any meds and ointments for pain, ice & heat too. Try physical therapy at home. There is no magical pill for any of us, sadly. But we're all here to support each other. Talk to your parents and let them know how you feel, and your doctor too. I'm praying for you because I know its hard. 🙏🌼

Apr 02, 2015 8:19 PM

Hi, I'm 14 and I can relate. I'm sick a lot, and have dystonias and (not yet fully diagnosed) CRPS (Complex Regional Pain Syndrome aka RSD, or causalgia). I have unending back pains. Did the pain that's making you need help walking start in a specific arm or leg? My hands and arms were the first of my limbs thati have to not use. Now, I need a cane just to not feel like puking from the pain. However, every test I've had done always says my body is normal and healthy. It's extremely messed up. When you mentioned your arm it made me think of CRPS, just starting with a different limb. If it is CRPS, it could be made much worse by physical therapy.

Definitely research symptoms though, and try not to give up. I've been working really hard at not giving up myself, especially because I feel like all my life is slipping away from me. I've had to give up many things to hurt a little less, and it's not easy. It won't be easy.

Good luck! T

Apr 02, 2015 8:34 PM

Ferretbandit, You are an inspiration even to me at 53! I just had to start using a cane a few months ago, and I at first worried how "old" it would make me look. Now I don't care because I need it. Stay positive and know I'm praying for you too. I really hate thinking about young people suffering. 🙏🌼

Apr 02, 2015 10:41 PM

Thank y'all so much and I have gone to a children's hospital and he thought of piriformis syndrome. It's where the piriformis muscle presses against the siatica nerve. But he doesn't even know for sure but said he was going to give up. I have to use a crutch to get around and that starting not to help me keep my balanced I asked the doctor what to do to help me walk pleaded and begged but never answered my question. Yes Ferretbandit my pain began with my headaches then my leg and back pain along with vomiting and sudden weakness in the arm down only on the left side. On the right side everything is fine. It's blurry on the left side of my eye but not really on the right. But every single test they run they find NOTHING and it's very frustrating they aren't taking me seriously because I am so young

Apr 02, 2015 11:23 PM

I have lived with chronic pain since 2006. It is now 2015. That is 9 years of feeling pain, daily, in some shape or form. I have degenerative disc disease, 5 ruptured disks, myleopathy, radiculopathy, and spinal stenosis. I've had multiple procedures and surgeries for my health. I've been told that I will feel pain for the rest of my life.

I tell you this not to take away from your story, or to tell you that someone is worse off than you. There's someone worse off than me. I tell you this because I've been there. I've been broken. I've been at the point of so much agony I wished of giving up, but that that was never an option. Inspirational quotes did not help me. Friends left. Family didn't understand. In the end, my greatest advocate was myself. I tell you this because your mental health is your greatest asset. Whenever I stress, my pain flares. My body tells me no. If I need to cry, I allow myself to without the need for guilt. If I need to tell someone something positive or negative-I say it, always respectfully of course.

Your brain needs just as much nurturing during the chronic pain period as your physical body.

Talk to someone whom understands. Better yet, someone nonjudgmental. People associated in our life have preconceived notions of attitude versus personality-two different things, and how they break down during pain. Oftentimes people can worry too much, not know what to say, how to process, or we can offhandedly create caregiver burnout to those that are surrounding us for support. In a therapist setting this can create an ideal way to process what you're going through and get that energy out.

Much love to you.

Apr 03, 2015 10:59 PM

I'm sorry you are going through this! Don't give up, that is the only way our pain beats us! I am a 34 year old woman, I teach full time high school, I have a three year old little girl, and rheumatoid arthritis (an auto immune disease where my immune system attacks my joints causing pain, stiffness, and swelling all over my body). My RA first appeared as severe low back pain, it took me TWO years to finally get a diagnosis! I was so relieved! I'm not crazy! I went through several doctors and specialists before I found "my team." Doctors who listened to me, searched relentlessly for answers, and believed me. If you don't think your doc is listening to you then how on earth can he/she help you? Find another, then another! I have my family doctor, my rheumatologist, a pain management specialist, chiropractor, and masseuse who keep me mobile.

Half of all doctors graduated in the bottom half of their class, you may have the "dumb" doctor (no it's not nice...remember I am a teacher) but there are students in my classes that I would one day trust as my doctor and others that I wouldn't allow to cook me food...find one for you. Keep searching.

Apr 04, 2015 12:06 AM

I'm sorry your doctor is ignoring you. Maybe see if you can get some adult who DOES understand to come with you. I'm lucky because my dad is geeky about medicine, does his own research, and can reasonably talk to doctors. Even so, some doctors really don't care about helping their patients.
I always felt angry when a test or physical said I was perfectly healthy. However, it might be something that requires differential diagnoses. CRPS is one of those. It means I take test after another after another. The more information they have, the more likely they can say "you don't have this or this out this or this...." and make guesses at what it might be.
Right now I'm using a cane like a crutch, and will probably end up in a wheelchair.
The other option is to do a ton of research, then try to see new specialists. I will be going toa children's hospital next week to figure out pain management, but it seems like who you get is whoever happens to be available the soonest. Maybe if you go again, the next person will believe you.
Is your pain spreading? How fast? From where to where? I would write some of those things down to give visual to certain doctors.
Good luck!

Apr 04, 2015 8:04 AM

Welcome Taeya, sorry to hear that you are going through so much. Just a thought, but to be honest and I'm not a medical professional but the sciatica does sound a bit like piriformis syndrome. But that wouldn't explain the other symptoms though. Just keep your head up and keep trying.

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