I am upset..very upset. I have been dealing with constant chronic pain for almost 4 years now; I forgot what being pain free feels like. I not only have fibro, but CRPS/RSD, arthritis, TMJD. and slipped discs in my spine. I am 24. I don't have family support, I feel so alone. I am depressed...my parents had stopped paying for my prescriptions and medical expenses including treatment. CRPS gets worse daily, which means the longer I go without treatment, the more likely it will not work for me. Work isn't going great...management is giving me a hard time about everything (example..she's wanting a doctor's note for me having to use Ben Gay). I work in retail by the way. I am in major debt. I recently went to my pain doctor and wanted to try and switch to another muscle relaxer besides Soma so we tried Baclofen again (I have literally tried every single muscle relaxer in the book).. I was told that if it didn't work I could come back in and give her the bottle and she would write me a script for Soma. It didn't work so when I called, I was told that I needed to stay on it longer. I am so upset because I NEED my Soma...my pain is horrific. I also switched pain medications; I had been on Norco for over a year and a half and we had tried Nucynta which only gave me headaches and nausea so now I am on instant release morphine but sometimes I need to take more than 1 (it's 15 mg). I had called and asked if it was okay and it is, they just won't give me anything else if I run out, so I am taking the Nucynta randomly as well. I hate being scared when my medications don't work, or when I am not listened to. I work so hard at my job and I am treated unfairly. My family favors my younger sister, giving her my father's credit card and a new car but "can't" help me with my medical issues. I don't know what to do. I am going to have to pick up a second job and that is going to kill me physically. I just want to be happy, and to have an answer. I want people to care about me and show it. Having an invisible illness is so tough. Every minute is a constant battle, and i try so hard to be happy and positive...but sometimes no matter how hard I try it's nearly impossible.
My heart goes out to you -what you are dealing with you shouldn't have to do on your own. But hey, you have been and respect to you.You are undoubtedly a strong young woman. Having an invisible illnes is tough - we all know that! Can't really advise you much cos the American system is different to the English. Just wish you all the best. Take care
In reply to lovett and avenk...
I am currently under my parent's insurance for another year and a half so I am good there, however, the medications still are costly as well as the treatments I have been trying. I am aware of financial aid and such as well. I am looking into a ketamine infusion which has helped put some CRPS patients into remission, however, since mine has been active for so long it's really up in the air whether or not it will work. Right now I am really pissed off at my pain doctor because of the Soma. I am withdrawing from it and CRPS already causes muscle twitching and I cannot sleep what so ever. I can be as tired as ever and I will lay there and my body will not be still; sometimes I can't even breathe because my body will just jolt. I have been bawling all night long and going crazy, searching for a Soma in all of my purses and my car, etc. The other day when I was staying at my parent's house I asked my mother for one of hers and she told me she only had 2 until October, and I could tell she wasn't telling me the truth. It hurts she wasn't even willing to help me.
My parents found a great doctor in Florida (I live in Missouri) in Feb. and we all went down a few times, however as I mentioned before, they cut off treatment, so they won't be paying for me to go down there anymore. During that time, my mother had taken an abundant amount of notes about my illnesses, but seemed to have just forgotten about it shortly after (considering it's invisible). When I was living with them for a while after I moved home to save up some money to get my own place, I would get yelled at for not cleaning up my room, or doing other house chores...so it was stuff like that. My parents couldn't see that maybe I wasn't able to do that. It's hard enough for me to get out of bed in the morning.
I feel so alone right now..it's weird because I would rather be alone because I find every person so annoying.I don't want anyone to talk to me about what I go through because I Have tried to explain to people close to me what it;s like and they don't even attempt to understand or want to it seems. Right now I am at a dead end. I have to be up soon, I had been laying in bed for hours crying, praying to God I would get some rest and He isn't listening!!!!! I have a full days work tomorrow and then a meeting right after and my body just can't do this anymore. I can't do it.
A quick note of support to let you know that you are not alone. I am a month out from my most recent (and 4th) spinal surgery. Prior to the surgery, I spent two and a half years living every moment at an eight or nine+ on the pain scale (out of ten), a score previously resrved for acute pain episodes. Something happened to me during that time that I think is similar to what you are experiencing. I became isolated from just about everyone I knew. Other than a daily call from my daughter and walking (on a scooter) my dog while nodding to other dog walkers, I was alone. The isolation became my comfort, so much so that after the surgery, the hospital and rehab facility became an assault on my senses. I could not stand the noise or the people.
Before all this, I was a very sociable person. Now, I feel broken despite the fact that my physical pain is substantially better.
I also wanted to share with you my love for Soma. A little research yielded the fact that it is chemically identicle to a Quaalude (also known as Disco Biscuits in the 1970's). It was the most effective muscle relaxer during my early days of FM in the early 1990's. Unfortunately, I somehow became allergic to it breaking out in hives should I take a dose. As I never did recreational drugs or even drank alcohol (too vanilla?), soma was the only medication I ever looked forward to taking.
Again, we are different but in many ways the same. I am here for you in any way I can help. YOU ARE NOT ALONE!!
Be good to yourself.
I am sorry things are so rough right now. I am thinking positive thoughts for you. Also, if you ever need to just talk to someone, the crisis number listed on this page 1800-273-TALK is available 24/7. Even if you just need to hear a supportive voice it is worth the call. I am praying for a relief for you and some SLEEP - I know I am a horrible insomniac and when I am really over tired EVERYTHING seems so difficult and my mental state is down. HUGS!
Great suggestions and support have been made already to you, and I can only add, that I hear your frustration and pain. You appear to be me a survivor, one who fights and doesn’t give in easy. This will serve you well as you work with medical system and the related practitioners. Never give up on yourself. You are so amazing in how well you are dealing with this full plate of challenges that has been served to you. Huge hugs and it is okay sometimes to have that frustration cry as long as you get up again to fight another day.
If it is any comfort I add me to your ever growing list of supporters. Hugs and hugs and hugs!
You are in my prayers. Stay strong!
I am so sorry to hear about all the pain and struggles you are dealing with. And I am sorry that your family seems so distant. Please know that you can always come on here and find support and to vent, when you are in extreme pain all the time (which I totally get), venting and getting support from others who understand is vital.
Though you are struggling with so much, please know that you are strong and that you are loved. God sees our pain and He holds back the worst (which I know doesn't sound like much when you're already in so much pain), but He has not forsaken you and never will, that I promise you.
I also know the financial struggle of treatments, medications, doctors visits, etc. It can feel very overwhelming especially when you are dealing with so much pain and fatigue, but please keep your head up. I am always here if you want to talk or need to vent. You are in my prayers.
I'm new to this support group, and I just started browsing and saw your post.
I'm young too, 21, and I have gone through the same issues with medical bills and other bills, losing contact and support from most of my family.
All I can say is to stick to what you have been doing, it's encouraging to see another person that has similar medical issues at a young age like me, that's had the strength to manage to be able to stay working while dealing with so many personal issues that nobody at your work could even to begin to comprehend. Especially retail, with all the people you communicate with everyday. I can definitely relate to you with that, I worked in retail ever since I was 15. I was fortunate enough to have great skills in my company that led to me becoming a store manager, area sales manager and store auditor. Unfortunately for me, right before I was about to start my district manager training to run an entire district/state, that's when I started getting severely sick and very quick, which resulted in me having to resign. I haven't been able to work since then, and I can't wait till the day I just wake up & all the problems are gone and I can go back out in the world and get back to doing what I'm passionate about.
Retail is a very demanding and strict job, no matter the position. Are all of your bosses aware of your condition? Also, I noticed you live out in St. Louis if I'm not mistaken. I live in Naperville, IL and my doctor is Rhumatologist Dr. Robert Katz at Rush Copley in Chicago, he's one of the respected and awarded physicians in his field.... Now I would highly recommend him, if you were willing to make that kind of trip, thousands of patients from all over the world travel to see him. He's great, and very expensive, but he made an exception because of my issues so that for an entire year, all I have to pay is $200, and I see him once every three weeks, that's how passionate he is about his work so then he could continue to have me as a patient. If your able to see him, it could definitely help your health and bills. Otherwise you should research and contact several doctors around you, whoever the doctor is, if he is like my doctor, he will make sure you can afford to see him whenever you need too.
If no luck, you could even contact My Dr. Katz and see if they could refer you to a good physician in your area.
You'll do just fine, just remember how much you have and continue to accomplish everyday while dealing with so many medical problems. In my eyes, you have already accomplished a lot of feats that I have yet to do.
Stay strong and if your interested in more about my doctor feel free to contact me