Hi Emily and welcome to the group. Have you had surgery for the syringomylelia? If not, it might be a good idea to see a neurologist since it sounds like your quality of life is being greatly affected, and surgery might be a good option for you at such an early stage in your life.

Jeri

hi emily, i wanted to welcome u to the group. it sounds like u have alot going on. it also sounds like ur dr is trying alot with u. just a thought but sometimes we just need rest. weather changes can affect us too. maybe try some meditation and give ur body a break.

hope u get some answers.
toni

Hi Emily,
It sounds like you're exploring lots of ways to manage your pain, not only medications. You sound really smart and mature for your age! I have a couple of suggestions for you. When I am at work, sometimes I need to take a "time out" to let a nerve pain episode pass, and sometimes I need to just go home early. Your school probably knows about your situation, but have they made any accommodations for you, like freedom to hang out in the nurse's office if you need to? Or maybe starting with shorter school days and working up to full time? you have a legal right to those kinds of accommodations.

I know meditation helps a lot of people, but I find just the opposite helps- when my pain is really terrible, I need distraction. I put my headphones on and either watch a show or listen to podcasts. Sometimes I play this ridiculous scuba diving game on the Wii, because I find it absorbing and soothing.

I also see a psychologist who specializes in coping with chronic illness. If you're being treated at a children's hospital, they can probably hook you up with someone qualified who works with teenagers. Being in pain and still functioning in your life can be stressful for anyone, let alone someone still in high school. Talking to a good counselor probably won't ease the pain itself, but it might help you have less anxiety about it, and you might get some good tips on pacing yourself so you don't aggravate your conditions.

Hang in there!

hey have you tried meditation? you can get some guided ones online that you could download for free..... it is something I am trying have had a little success with.. but not too sure Im that successful with it, so Im hoping with more practice I will get better at it and it will help some more

Hi Emily ,

Welcome to the group, there are a lot of caring and loving people here. It does sound like your Dr is trying a lot of things with you.. Have you thought about getting a pain management Dr? They have other ideas to help with the pain. I use a TENS machine as well. and also have many meds to help with the pain.

It too see a psychologist they can help too. as well as a therapist to talk to sometimes they have good ideas too. I know I have not given you much advice but I sure do hope you find a solution to your pain

Carenth is right the school has to accommodate you for you illness and special needs. I would talk to your guidance counseler and see what they can do.

Hope this helps,

Cathy

Hi Emily,
Welcome, but I'm so sorry you have to be here at just 15....

Have you had a physical therapy consult? Warm water PT is great for fibro, and though I'm unfamiliar with your other dx's, it might just help with those too. Exercise is great for fibro, but often times we can't handle 'land' PT. The warm water is much gentler.
Have your doc write for "consult for aqua PT". Your local wellness centers often have 'therapy' pools. Do NOT try water PT in a regular pool- it's too cold and can cause more damage than good

Good luck and stay and let us know if any of our suggestions help!
Sandy

Thank you guys so much!!!!!!!

Hi and Welcome Emily....
Great to meet you and hope you can find the support of the CP group as inspiring as i do... Wonderful people...
Hope the pain has eased up a bit and the first week back to school has gone well...
Best wishes S

Hi Emily. I have fibro. I like to stretch in bed when I wake up in the morning. I am very stiff and I can do it in bed. I also have MPS so this makes it worse. Stiffer muscles. I do relaxatiion techniques and have learned some behavioral therapy to deal with anxiety and stress. I try to eat healthy. I know that some other with Fibro have gluten free diets, I don't but you need to decide that for yourself. I have a hard time with my eating so I sturggle with it. I love warm water therapy. I would love one of those pools for a bathtub. I use a heating pad because that what helps me the most. I not sure of what your first diagnosis is. I will have to google it. Starting with trying to quiet your mind is what I did first. Find somewhere quiet. Get comfortable. Breathe in through your nose and out though your month saying one in your head. Repeat and then say 2 until you get to 10. Put you hand right under your ribs. Just rest it there to make sure you can feel your upper lungs go up and down. This can be difficult because we all have alot going on in our head. It takes practice. The more practice the easier it gets and the less running thoughts you have. You'll realize that it really doesn't take long but helps if you are having really bad pain or can't calm down. I good to just to go on a walk and simply describe things. You do this in your head. How the air smells, How a flower feels, the brightness or sun. be very descriptive. You can do this in you home and talk out loud if you can't go for a walk, I do this with my therapist after I have talked about something that has upset me. We find an object and I just describe it. It helps me to disconnect from the feelings I was having so there no as acute. Also reading, dv, game, crossword puzzles and thing that is distracting can help you get through the day and help you stop thinking about the pain. I find sometimes when I taking to other in a social setting since I dont get out much this distracts you. Having a pet might do this. I like to read romance novels, watch movies. go on DS. I lose track of time. The more your able to quiet your mind the easier changing behaviors are and calming yourself down is. I can't do yoga. I did in college and liked it but I could only do certain easy stuff. Plus please make sure you are getting the accomadation you should be getting at school. I had panic attacks at your age. They told me I could go to the nurse and when I did, the nurse would let me lay down to calm down she said I wasn't sick When I went back to my guidance consuler she said there was nothing she could do about it. So much for helping out. This was a long time ago. I know sometimes you have to yell and fight to get what you deserve but down let the school give you less then you deserve. I hope I helped.

Stranded,
I like your relaxation exercise. I'm going to try it.

I learned one when I was in 5th grade: Lay down, pretend you're on a beach with really deep sand...imagine you are sinking in the sand, one body part at a time. Start with your feet- imagine the sand in your toes. Work your way up your body, until your head is sinking in the sand. This works much better if you've ever experienced laying on a beach, the sun beating down on you, the sound of the waves crashing, seagulls cawing in the breeze. A beach is my "happy place", so this relaxation exercise works especially well with me.

((Hugs))
Sandy

That is a self hynosis technique your doing imagine beach around takes more practice. I do this but I pick a different place. Near the ocean but above in on cool grass under trees with a light breeze. I don't deal well with warmth. If you feel the relaxation go from the top of you head to bottom of your feet in waves like the ocean, this helps me loosen up my muscles after I have done the breathing 10 excercise. Than there are harder ones like drawing a circle on a board and writing the a letter A in the circle on the board and erasing it. Going to B. you have to keep imaging it in the circle and imaging you going farther and father up the alphabet to Z right and erasing as you do every letter. There so many things to do. Obiviously this more complicated. I had chalk board, so I imagine a white board with marker and I had problems with erasing the circle. It was real practice. You have to make sure you are also breathing in and out like you are on the 1 through to 10 so it a slow process. You could try it without the circle and then try circle. If your not use to it start with the breathing in 1 and out 1 until ten but eventually you can start doing more breathing and guided imagary in your head with the breathing. It takes time. I used to have a cassette tape my psychologist gave me when i was 19. I wish I had a DVD of it. I just do it in my own head. You can write you own safe place and write it into the breathing. YOu could even record it or have some one who you know who has a relaxing voice do it and listen to it and do it daily. Or you could just read it to yourself until you got it pretty much accurate in your head. Also there are DVD that you can buy and there may some you may be able to get out of the library. Also books on these subjects. Hope this helps someone. It helps with my anxiety a lot. To destress to so that is helping pain also.

Great suggestions, Stranded,
I especially like the letter in the circle one. I'm going to try that this afternoon. I'm having problems with high anxiety right now, and the anti-anxiety meds aren't helping a lot. I think this would add to my relaxation a lot. It's amazing what the mind can do for itself, instead of using chemicals to fix the problem.

Sandy

I really appreciate it! Thank you guys for the suggestions and kind words. Made my week much better. :)

Syringomyelia causes pressure on the spinal cord from the inside of the cord. Since the dura is inelastic, the syrinx compresses the nerves in the cord.

I also have Chiari Malformation with syringomyelia. I had posterior fossa decompression in 1996. Symptoms stabilized after that. Surgery is not a cure-all, though.

I hope you can find some relief. Gentle hugs.

As much as I'm sure you want to be out "at school" and around kids your age, your illnesses may not allow that. Homeschooling may prove to be the better option. A lot of the time with Chronic Pain you have to choose the path of lease resistance. For you, that definitely sounds like less move around = less pain. Have you checked with your Rheumy and other Dr.'s on what their take is on this?

The other posters take on a surgical intervention sounds like a good way to go at this point also.

Tramadol is not the best med in the world for longterm chronic pain and Lortab is a short acting pain med, so with those 2 your getting lots of peaks and valleys and in that situation your body has to use a lot of energy to keep your pain under control continuously, might be time to have a serious talk with the Dr. about a better long term Pain Management plan.

You've got quite a few different options, just have to figure out which way you want to go.

Take care,

Kat