I'm 19 and struggling with chronic illness.

Hello everyone. My name is Sawyer. I have an "Orphan" disease. Orphan diseases are conditions that have only ever appeared in a few people worldwide in medical record. I've suffered from this disease my entire life, and it seems to be getting worse into adulthood. My symptoms are Major Apthus Ulcer, Juvenile Arthritis, skin rash, and several other less intrusive symptoms. Major Apthus Ulcer is medical-speak for just flat out gargantuan ulcers in the lining of the mouth and throat. People call them canker sores, but these are not canker sores. These are ulcers varying in size from a nickel, to a 50 cent coin. They more often than not make it completely impossible to eat or drink anything. At their worst, I become emaciated. I constantly struggle to maintain a healthy weight. The arthritis and everything else I experience are just small potatoes compared to this. The pain that these ulcers cause me is very often unbearable, with sharp pain from the ulcers and ache radiating into me ears and sinuses. It's very similar to an open wound in your mouth or throat. I have to swallow saliva, so there's no possible way to not move the skin, even if I were to have a feeding tube inserted into my abdomen, which has been discussed as an option.

I'm on a 25mcg Fentanyl Patch, repatching every 48 hours, alternating of high doses of Norco and Percocet 3-4 times daily, antidepressants, anxiety-reducers, Adderal, Immuno-altering agents, antibiotics, steroids, and sleep aids. I'm new to this forum, if listing my entire pharmacological cocktail is really necessary, I will list everything in detail at a later time.

My sister and mother both have this condition, and it seems to affect male's much, much worse. I've been to at least a hundred and fifty doctors in my life, including two trips to the Mayo Clinic of Minneapolis, a trip to the Cleveland Clinic, and a few universities.

Honestly, I am starting to get to the end of my wits with all of this. I'm under my parents insurance, so they control whatever procedures I have done and whatever drugs I take, which is awful. Extremely often do I find myself needing additional painkiller, but they believe whatever pain I'm having should be taken care of with what I'm on, and if I get upset, they accuse me of being a drug addict and cut me off of all pain medication. Needless to say, this upsets me even more and leaves me trapped with living this agonizing pain.

If you've actually read this post in it's entirety, thank you. Any kind of advice would be absolutely wonderful.

Thank you so much for your reply, Trudy. In terms of my testing, I couldn't begin to tell you how many times I've had blood work, I've had ulcer biopsies, MRI's with Berium contrast, endless x-rays, a colonoscopy, and I'm forgetting a couple other types. The blood tests that have come up abnormal have always returned to normal within a month or so unexplainably. The few times that my bloodwork has pointed to a possible disease, I get more testing done, it comes up negative for that disease, and I'm back to square one. With all of my tests in mind, my doctors think that it's something auto-immune, but that's the only clue ever found.

Bone marrow biopsy is one that I has never been mentioned, I'm honestly not sure what that would show. I only know that those tests are very, very painful if you're non-sedated.

Oh I remember Magic-Mouthwash, I tried that stuff when I was about 5 and well, I would still be on it if it helped haha. I've also had a very potent Lidocaine swish-and-spit that was just powerful enough to make me not taste anything, but not powerful enough to numb the ulcers.

Hello & welcome to the forum. So sorry to read that someone your age is struggling with such medical issues.

I am surprised that you have been fortunate enough to find a dr willing to rx Fentanyl & the meds for BT pain. Most drs will not rx these meds because of your age. Generally they ignore what the medical condition is they will refuse any pain meds to someone so young. You must have one compassionate dr who believes a person should not suffer. Your comment about drs acting like a person is a drug seeker is right on target because this holds so true. Most of us here are under the care of pain mgt drs & with the new rules & guidelines the drs have to work under one thing we do not do is take more pain meds than what is rx'd because calling in for an early refill will get us kicked to the curb & then no dr will touch us. It is a very strict environment.

You asked about listing all of your meds, no that is not required at all. Some people like to list them in their signature line but that is strictly up to you whether you want to or not.

Hopefully one day there will be a break through for you & the drs will be able to get your condition in remission. Does the immuno-altering medication have a great effect on your condition?

Take care.

Operatic:
The feeling is just crushing, like the world is just starting to open up, but you can't exactly take advantage of all the opportunities given to young people at this age. Also, I've had a counselor/therapist since I was 14. He's been a great friend to me, and he knows things about me that he'll take to his grave. He's also a very effective mediator in conflicts between my parents and I. Those appointments are expensive though, so I don't see him as often as I'd like to. But if anything big ever happens, he's always a phone call away.

StrayDog:
I've had a good number of people say that my doctor must be very empathetic and caring, considering my prescriptions. But the only reason that I have these powerful pain medications is because I've always played by the rules with them, I have very visible sources of pain so it's not something I have to worry about convincing him of, not to mention my parents keeping all of my pain medication under lock and key, and no history of addiction in my past or my family. Also, I actually started these pain medications with my old PCP who was our family doctor for 15 years, before retiring to Africa. Her replacement has been almost equally empathetic and even more listening. It's hard to find a doctor that is actually interested in you. And the immuno-altering drugs, it's hard to tell whether or not they're working.

Abilene:
Good question. Now, just seeing how mature everyone here seems to be, I can be perfectly honest about this sort of thing. My mother and sister don't experience any Arthritis, although my sister has Psoriatic Arthritis and a bleeding disorder. However, in terms of ulcers, my mother and sister both have ulcers develop in their genitalia. I'm male, and I've never had this problem. This disorder actually originated from my grandpa on my mothers side, and my biological grandfather ran as soon as he heard the news that my grandmother was pregnant with my mom, and unfortunately he's been dead for quite some time now, so I can't contact him to ask about this medical condition. I've never met anyone else with this kind of condition. And I was able to go to elementary, junior high, and most of high school, I was even on track to graduate miraculously, but 3 months away from graduation, I got so sick that the stress of school would affect my immune system to directly that I probably would have sustained extremely heavy damage to my esophagus and the lining of my mouth and throat. Not to mention what it was like to attend a high school while dealing with problems like this. And I'm sure I'm not the only one here with experiences like that.

Thank you so much to each of you for showing so much compassion, kindness, and support. It means so much to me.

poplargrove said...
Soyer,
I feel nothing but compassion for you and your pain situation. My situation pales beside yours. I am glad that you at least have a doctor who you trust. That means a lot.

Since you are 19, can't you control your own medication legally? (since you are over 18?) I know you are under your parents' insurance, but that doesn't mean that they have to control your meds does it?

I have a 22 year old daughter who is still on our insurance, she gets prescriptions through our insurance, but there is no way that we could (or would) control her prescriptions.

Just food for thought. I hope you can experience at least one happy, bright thing in your day today. Sending peaceful, compassionate thoughts your way. Hang in there...

That really means a lot PoplarGrove. Truly, it does. My parents say that as long as I'm on their insurance, having them pay the co-pays, and living in their home, they require that they manage my meds for me. As if I'm a toddler who thinks bottles of pills are rattles with candy inside. Legally, I don't have any way to manage my own medications until either my parents view me as mature enough to properly use them, I move away and am forced to have to manage my own meds anyway, or I move out and get some insurance. Neither of my parents have ever dipped into my medication, I know that for sure, so legally, I have to do things by their rules. Thank you so much for your well-wishes, it really does brighten my day :)

Jim61938 said...
For starters I am so sorry that you are going through all of this and I can understand your issues with your parents, but they are giving you the medication in the amounts the doctor has prescribed.

You say that you have always played by the rules with your pain medications, and this is important, but what would you be doing if you controlled and had access to your pain meds. You have said that there are times you wish you had more pain meds. While I can certainly understand as there are times I have been tempted to take more myself, it is critical that you never, ever take more than prescribed as this can end up screwing you down the road. This may be why your parents really are controlling your meds because of what you may have said to them and they are afraid that you might turn into an addict if they didn't.

Have you ever sat down with them and asked them flat out, calmly, why they feel the need to take control of your medication?

Beyond that the only thing you can do is talk to your doctor and explain that there are times when your break through meds do not work or do not work well enough. Maybe then your doctor might be willing to try some other kind of medication to help you out.

Oh, it's no mystery, they are controlling all of my medication, including the meds that carry zero risk for abuse, like propranolol or Lexapro, because they're afraid that I'll lose control of myself and become a drug addict. Like I said, I've always played by the rules and I've never taken more than prescribed, yet they insist on controlling these medications completely. I think they've watched too much Intervention.

I have tried to get them both to sit down and talk about a way that I could even start out managing the pills that I can't abuse, like Lexapro, propranolol, or even just the little melatonin tablets that I take at night, and they won't give an inch.

It's hard to blame them for being afraid of prescription drug addiction though. More people are addicted to prescription drugs than all of the street drugs (Coke, Meth, Heroin, Ecstasy, etc.) combined, and prescription overdose is now the number 1 cause of death in the US, topping car accidents. I don't want to scare anyone, but the rules are there for a reason! It's same reason the DEA is watching over the shoulders of your doctors whenever they write a prescription for a painkiller. This stuff can ruin the life of even the brightest of people.

I'll be honest though, my parental controlled medication wasn't supposed to be the focus of my original post. I really wanted to focus more on my condition, possible treatment options, pain management, things more pertaining to that kind of thing.

Abilene said...
I had never heard the term orphan disease. Does this one even have a name or is it just known by the symptoms?

It's only known by its symptoms. I have no proper diagnosis, which makes insurance really happy to pay for thousands of dollars worth of drugs to treat it. I used to do a Humira injection every week, and they were about $1500 per dose. The most expensive pen I've ever used.

For the longest time I thought I had Lupus. I even have the "Butterfly Rash", the facial rash synonymous with Lupus that doesn't heal. Honestly, whatever I have, it's not gonna be what I expect. I think I'm just reacting really strangely to a condition that has affected more than just a handful of people.

It must be beyond frustrating to have all of these symptoms and no diagnosis. It's hard enough for me to deal with the daily trials of Crohn's, but if I need to see a doctor or go to the ER for any reason, I can at least give them something to work with.

rocckyd has an interesting idea about NIH; maybe they could help.

Glad you do have a trusted therapist; that can be invaluable. I'll reiterate my suggestion of checking out youtube for relaxation/breathing videos. I had a friend who would always bring these up, and I think I injured myself with all the eye-rolling I did in response! But, eventually, I tried a few and found they could at least put my mind/body into a more peaceful place, if only temporarily, and sometimes something is better than nothing when we're suffering so much.

One other thing about all the numbers being thrown about, especially in the media, they do not tell you how many of those deaths are caused by something else, like pneumonia, advanced old age, etc. All they look for was this person or that person was on this drug and that drug and then died.

As Susie mentioned there have been a number of studies done that indicate that people who take pain medications and really need it due to pain rarely, if ever, do become addicted. Believe it or not but I had to educate my doctor, who was barely out of medical school at the time, on this. She ended up either asking around or did some research on it or both because a short time later I was on some pain medication that actually worked for me instead of all the BS crap she had been prescribing and I have not had any problems with her since then.

Any way as I mentioned in my last post you really should talk to your doctor about how you current pain medication works or doesn't work for you and maybe talk to your doctor about your parent attitudes and have him talk to them about addiction, dependence, etc.