Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
Hey guys! :-) I've missed you.. First of all, I want to apologize for being gone so long. I want you all to tell me what I've missed so I can make up for it. I know it's been since Januray, I think. It's all just been so crazy.
I have improved, thankfully. I don't have near the qualit of life that I want due to the syrinx and IIH pain, but I'm not completely miserable all the time either. I'm kind of functioning now which is awesome... Anyway, as to why I left - In a nutshell, I was diagnosed with an anxiety disorder that was leading to clinical depression in the midst of the semester with all honors classes that I was almost failing. As if getting pseudotumor headaches weren't enough, every time I get upset, my intercranial pressure rises, which leads to the worst headaches you could imagine. I had a lumbar puncture done to relieve the pressure but had a leak that led to a spinal headache for a few days so I had to have a blood patch to fix it. The relief lasted for about 4 days, but now I'm back to where I was. I'm on Topamax still awaiting more treatment options.
I began to get so fatigued and tired that I could hardly get out of bed but just blamed it on medication at first. Then, I started having major feminine issues and abnominal pain. I went to the OB doc who did an ultrasound of my uterus, which was normal, but found that my thyroid levels were low. We then found that the node I had on my thyroid had grown and multiplied - now there are several cysts and nodes and a goiter. I started the hormone pill for it and am going to have to go get a biopsy.. One doctor says that it is harmless while one is concerned about it being something bad. We aren't sure what caused it, but it happened while I was still eating gluten before I knew I had Celiac so I'm pretty sure that had something to do with it. I'm hoping the pills will help because I'm so exhausted all the time and my neck hurts like crazy. During all this, my mom has been in nursing school, so I've been stuck with my dad who I can't really talk to at all about anything. My boyfriend and I have been fighting a lot and I lost my best friend of four years.
But, my mom just graduated about three weeks ago. I got on homebound and got my grades up to all A's (barely, just by rounding) despite having the bitchiest science teacher I have ever encountered. I'm not really sure how; I couldn't get out of bed for 50% of the day most days. Now I'm determined to be saluditorian, because I went through complete hell to get those grades and I'm not going to mess it up.. I've been seeing the chiropractor to see if it would help my back pain, and it has helped quite a bit and improved my posture. Since I'm on SO many drugs now I decided to try and quit the Lortab I'm on and just switch to Ultram. So far, I've gone from 3 a day to just 1 which seems like a good improvement to me.
I've been able to exercise more and even get out with friends. Plus, I'm having a rather large 16th birthday party this Saturday and I've been able to clean on and off this week less pain than I expected. So, now for the big news..1) I'm signed up to take a 3 week forensic chemistry class at Western KY University that starts June 23. So, thats 3 weeks away from home in dorm with a friend where I have to be completely independent about treatment. It's going to be a really big step but I think i can do it. 2) I'm going to start marching band again in July. I'm playing mellophone for part of the show and then synthesizer for part of it because I don't think I could handle marching the whole thing. Once again, a really big step, but it would mean a lot to me to try and do something normal again. I just have to be extremely careful and stay hydrated, since I will be on the Topamax and Lasix together.
So, yeah. I'm nervous. I hope I don't get worse again.
... What's been going on with you all in the past couple of months? How's it going?
I have improved, thankfully. I don't have near the qualit of life that I want due to the syrinx and IIH pain, but I'm not completely miserable all the time either. I'm kind of functioning now which is awesome... Anyway, as to why I left - In a nutshell, I was diagnosed with an anxiety disorder that was leading to clinical depression in the midst of the semester with all honors classes that I was almost failing. As if getting pseudotumor headaches weren't enough, every time I get upset, my intercranial pressure rises, which leads to the worst headaches you could imagine. I had a lumbar puncture done to relieve the pressure but had a leak that led to a spinal headache for a few days so I had to have a blood patch to fix it. The relief lasted for about 4 days, but now I'm back to where I was. I'm on Topamax still awaiting more treatment options.
I began to get so fatigued and tired that I could hardly get out of bed but just blamed it on medication at first. Then, I started having major feminine issues and abnominal pain. I went to the OB doc who did an ultrasound of my uterus, which was normal, but found that my thyroid levels were low. We then found that the node I had on my thyroid had grown and multiplied - now there are several cysts and nodes and a goiter. I started the hormone pill for it and am going to have to go get a biopsy.. One doctor says that it is harmless while one is concerned about it being something bad. We aren't sure what caused it, but it happened while I was still eating gluten before I knew I had Celiac so I'm pretty sure that had something to do with it. I'm hoping the pills will help because I'm so exhausted all the time and my neck hurts like crazy. During all this, my mom has been in nursing school, so I've been stuck with my dad who I can't really talk to at all about anything. My boyfriend and I have been fighting a lot and I lost my best friend of four years.
But, my mom just graduated about three weeks ago. I got on homebound and got my grades up to all A's (barely, just by rounding) despite having the bitchiest science teacher I have ever encountered. I'm not really sure how; I couldn't get out of bed for 50% of the day most days. Now I'm determined to be saluditorian, because I went through complete hell to get those grades and I'm not going to mess it up.. I've been seeing the chiropractor to see if it would help my back pain, and it has helped quite a bit and improved my posture. Since I'm on SO many drugs now I decided to try and quit the Lortab I'm on and just switch to Ultram. So far, I've gone from 3 a day to just 1 which seems like a good improvement to me.
I've been able to exercise more and even get out with friends. Plus, I'm having a rather large 16th birthday party this Saturday and I've been able to clean on and off this week less pain than I expected. So, now for the big news..1) I'm signed up to take a 3 week forensic chemistry class at Western KY University that starts June 23. So, thats 3 weeks away from home in dorm with a friend where I have to be completely independent about treatment. It's going to be a really big step but I think i can do it. 2) I'm going to start marching band again in July. I'm playing mellophone for part of the show and then synthesizer for part of it because I don't think I could handle marching the whole thing. Once again, a really big step, but it would mean a lot to me to try and do something normal again. I just have to be extremely careful and stay hydrated, since I will be on the Topamax and Lasix together.
So, yeah. I'm nervous. I hope I don't get worse again.
... What's been going on with you all in the past couple of months? How's it going?
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I invited Bill to have dinner with me last Sunday. He wasn't willing to drive 7 hours to mid Michigan and teased me with his beautiful ribs!!! So, of course I ate alone and had cedar salmon
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check out that smoke ring. It tasted really good. I smothered it with Maulls BBQ sauce which is Local to St. Louis and one of the best I ever had.....
For me, I've been better. Hoping to find a new neurologist soon.
Keep us updated, kiddo!
Hugs!! :)
I am glad that you are making progress with school again....yeay! be proud.....huggles
I admire your strength. Congrats on all you have accomplished. I am so sorry about all the mountains that have been put in front of you. Keep on "Trekking" it will help fight off the depression. I have those headaches too. I understand the pain. I pray that you find the trick for yourself to keep them locked up.
Keep us up to date on your progress. We are here to support you through the goods and the bads. And we all know there will be both.
Good to see you on the board.
Hugs-RJ
So glad you were able to get on a home-bound program for school. I was sick in high school and definitely would have failed if I hadn't been able to take classes from home. I eventually switched to straight-up homeschooling and graduated early with a 3.8! Now I've graduated from university and can tell you that going home-bound in high school was one of the best decisions of my life.
Also very glad that your pain is a little lower. I can relate to your desire to cut your medications down, and so long as you're still having good levels of functioning, good for you! Managing your care on your own during the forensic chem class will be a challenge but also a great experience. If you're given a counselor at the dorms for the program, letting them know about some of your health problems might be a good idea. Pill minders help you keep on-track with meds. And make sure to keep all your pills in a lock-box, because theft is often an issue in dorm-type situations.
All the best,
-Megan
Sorry you had to go through some rough times, to reach the better times, but wow you have accomplished so much.
That forensic class sounds exciting and hey you should know what you're doing by now ; )
Enjoy that Happy Birthday! Party!!!
Hugs!
Toni