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05/02/2012 08:29 AM

Too young to hurt.

jourdan91
Posts: 5
New Member

I am a 20 year old male with psoriasis and R.a. I have had both since I was 9 and have yet to receive any help. No doctor will believe me even though it is on the blood tests, the nurse came in and told me it was bad but the doctor would not treat me because of age. Every doctor I go to calls me a liar, just spouting that I am just there for pain medicine. Admittedly I have looked scraggly, long hair and facial hair. Yet when I shaved my head and face and dressed in nice clothes the same thing happened.

The pain has forced me into drugs, horrible bouts of depression, a suicide attempt, and the loss of most of those people I try to get close to because they cant handle how I am during flare ups. The only thing that helps is smoking marijuana but that just keeps the pain at bay. I just don't know what to do anymore. My right leg cant support my weight but all the work that is available to someone like me is the hottest and most physical jobs. I do not really know what to expect, maybe someone who can relate and help me to cope. I just have no one to go to.

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05/02/2012 09:23 AM
claphappy
claphappy  
Posts: 4022
Group Leader

Hi Jourdan Sorry we have to meet here. Now I have heard every thing. I wonder if there are other issues in the blood work that the Dr's are not sharing. Have you tried a free clinic? If there is one around. I always thought Dr's had to treat patients that are higher risk. Some times I feel like a high risk with other illnesses. Beside using marijuana there are other natural remedies. I take 2, liquid turmeric and Fish Oil. They do take some time to help like the other RA medications. Also I would remain consistent on just bugging the heck out of one Dr. He could relent, as perseverance does pay off.

05/02/2012 12:29 PM
jourdan91
Posts: 5
New Member

Thank you for the advice. Unfortunately I have tried all that you mentioned. I tried fish oil for two years and turmeric for about six months, the taste of both was awful heh. I have tried just about every vitamin out there just trying to find some semblance of relief. Even started drinking yerba mate and kava kava teas.

I went to a free clinic just two months ago and was turned away and then after an injury I went to the emergency room and they wouldn't even give me cough syrup for my lung infection. Just gave me saline in an ivy and thought I wouldn't notice. As far as I can tell I am literally out of options.

Luckily cannabis has proved to do wonders, even for my cluster migraines (I have great genetics). It is just illegal and looked down upon, luckily my mother agrees that it is amazing how much it helps me. So much so that she wants to try some for her R.A. Hers is as bad or worse than mine. I use it like medicine, jotting down the time and amount and method of consumption and sub species. (Different species make a huge difference for me.)

I am not sure what the doctors see that makes me so wicked that they turn me away at the door but I am welcome to any and all advice. I just make minimum wage so I will try anything I can afford if it will help. I truly appreciate the replies, I was beginning to think no one would even listen anymore.

Post edited by: jourdan91, at: 05/02/2012 12:33 PM


05/02/2012 12:41 PM
kvnj
kvnj  
Posts: 3907
Group Leader

Jourdan, I'm so sorry to hear of your challenges with the health care system. All too often, people will see that someone has had a substance abuse issue and even if it was caused due to an intolerably painful chronic disease they label you as "med seeking". I see it every day.

If the doctors were to put you on something like Methotrexate or Humira, Enbrel or one of the other biologics, I don't see how they could accuse you of med seeking. As far as I know, they don't offer the typical user any type of a high. Have you requested those type of drugs, and not pain killers? If not, you should. They may give you more attention if you approach it that way, and these drugs usually have financial assistance programs through the pharmaceutical companies.

If your RA & psoriasis are showing up in your bloodwork, then they are bound by the AMA to treat you. You may want to remind them of that..


05/02/2012 09:49 PM
kym
kym  
Posts: 531
Member

Hi Jourdan,

So sorry to hear about what you've been through. Karen has good advice. Please don't give up. If you have RA you need treatment to slow down joint damage, if not to improve your quality of life.

I know someone who takes cannabis for severe menstrual cramps and pain in her hips that she gets with it. It is the only thing that gives her relief. I think she calls it "black widow" or something. Medical cannabis is legal where I live... although the status of that is tenuous because they can't figure out how to tax and regulate it. Anyway, I'm certain there are people with RA who use it to manage pain if they can get it.

You know, I don't see how an ethical physician denies ANYONE treatment for RA. Especially with the blood markers. It doesn't matter how you wear your hair, and if you're using MJ for pain control, that just speaks to your need for treatment.

Keep trying. Don't give up.

I have had pain relief from Fish oil. I take 4 grams per day, and have been on it for several months, now. I credit it with relieving pain by almost half. But for the past several months I've only been taking that -- and not a disease modifying treatment like methotrexate or Enbrel, and the disease just keeps on coming, where many of my joints are inflamed at any given time and the pain I do have becomes constant.

I like Karen's advice to focus on talking to doctors about treatment to slow down disease progression. And for pain, prednisone works for a lot of people and isn't a narcotic. Are you in the US? I know someone who is working for low wages and doesn't have insurance, and she has been helped a great deal by Easter Seals. You might want to see if they have a center near you.

Welcome to the group.


05/03/2012 03:46 AM
gettingoldsucks
gettingoldsucks  
Posts: 3428
Senior Member

I don't understand it either. They have pain management they could put you into if they are worried about addiction and overuse. Not treating with RA meds though does not make sense to me. How are you presenting yourself? Are you talking to these docs seeking help or just asking for narcotics and telling them you are using MJ? Attitude and tone of voice? What is showing up in your bloodwork that they are refusing you? Is it more then MJ?

Try going to a new Rheumy, ask for help but do not ask for narcotics. Let him get you on RA meds and Prednisone. Pain killers thru pain management can come later, let him offer it, or ask only after a few months.

Jourdan, if you are using anything else besides MJ, including other people's prescrition meds, please stop. It is dangerous, and all showing up in your bloodwork. Age does not matter with treating RA. They treat JRA all the time. There is a reason why you are being refused and it is not your age.

I'm sorry you are in this mess and really sorry you have RA. Help yourself so the docs can help you.

Hugs, Donna


05/03/2012 05:01 AM
PauleR
PauleR  
Posts: 1818
Group Leader

Jourdan,

I've been racking my brains with how to respond to your posting. I think Donna (gettingoldsucks) said it perfectly. She voiced all my concerns. Your age is not the issue. Please, listen to what she and others have said to you, because we care.

Post edited by: PauleR, at: 05/03/2012 05:01 AM


05/03/2012 07:34 AM
jourdan91
Posts: 5
New Member

I do not mention that I am in pain anymore for fear of being turned away and just point to my legs. My left one is covered by psoriasis and the right leg is so damaged from r.a. and hard work over the years it has twisted my leg until my foot relaxes at a turned angle.

I only started the marijuana recently as a last resort, never having used any drugs before besides tylenol I was actually afraid of it. Luckily some of my friends in college were people who smoked alot and they told me about how it could help. So I spent 3 months researching it before I did anything. One reason why I have so much trouble finding relief comes from not being able to take nsaids, anything that even slightly thins my blood causes blood in my bowels. I made the mistake recently of trying alka seltser, contains alot of aspirin, for the first time and lets just say that was not the most enjoyable experience. I have taken 20 mg of prednisone 3 times a day in the past, nothing tastes worse than prednisone.

Painkillers do not work for me only causing nausea and no relief from the pain. One doctor I went to a year ago for this called me a liar to my face even though I came in first thing and said I do not want any pain killers, I just said please help me find out what is wrong. I was having a migraine that took my vision for 6 hours also. She said I didnt look in pain enough and I said you kindof just have to get used to the pain after 10 years.

Trying to answer everyone back so if I forget anything let me know. I am a pleasant person, or at least my friends and family think so. I try to volunteer at the veterans affairs and help my grandfather through his trying time having prostate cancer while trying to live on my own on minimum wage, just 7.25 here(East Tennessee). I helped raise my 3 little brothers and our numerous animals and take care of everyone. My mother says I crippled myself early so that they might live hah. She gets a bit emotional at times from the r.a. and seeing me suffer hurts her. She said it was great that I joined this place so that someone may see what I am not doing right.

I have also had my right hand tip of my pinky finger removed because of a cancerous tumor that came up, I was a senior in high school when that happened. If some one could figure out what I am doing wrong I would owe them a lot because I cant figure it out.I would think enough has happened to me to justify at least trying.

The only thing I can think that they are seeing is my last suicide attempt, I drank myself to death, 2 quarts of moonshine in 20 minutes. That was 2 years ago and my mother, grandfather, and grandmother all were diagnosed with cancer in 2 months. I just couldn't handle it at the time. I have not even touched alcohol since from the taste aversion that developed.

Post edited by: jourdan91, at: 05/03/2012 07:43 AM


05/03/2012 07:37 AM
jourdan91
Posts: 5
New Member

Pain causes stress which causes depression which worsens stress which makes me more depressed and that makes me hurt more. A vicious cycle.

05/03/2012 08:21 AM
gettingoldsucks
gettingoldsucks  
Posts: 3428
Senior Member

Now I am even more confounded about docs not helping you.

First off, do you receive copies of your bloodwork? if not, ask for them. They have to give you one free copy every visit. Take them with you to new docs.

Have you been officially DX'd with RA? Your mother's doctor helping you should be a no brainer for him/her.

It sounds like you might have Psoriatic Arthritis which is a relative of RA itself. Have you been tested for it?

You are right about the vicious cycle of pain and stress. We all deal with it and call it the RA Rollercoaster here. Many of us are on antidepressants for depression. RA itself does something in the brain that causes depression. It is not just the pain cycles causing it.

At some point, a doc must have been trying to help if you were put on Prednisone. 60mg is really high and not pleasant. I take 10mg a day with my other meds and it helps. I've been on 60mg and tapered down from there during flares. You're right, it is not fun but sometimes it's necessary.

Also with painkillers, your body usually adjusts to them after about a month and the nausea stops. They don't work if pain levels are already to high. They work well if you catch the pain levels low enough and start treating it.

Lastly, I am saddened that you were in so much pain and depression you tried suicide. Honey, that is not the answer. You have to fight to find a doc that will listen to you and treat you with the right meds. There is life with RA. Everyone of us in this group is living proof of that and many of us have multiple AI diseases and issues along with the RA that we battle everyday. Our lives are still worth living. I hope you are seeing a doctor for the depression. If not, I highly recommend it.

I'm glad you found us too. Sounds like you really need to talk to people dealing with some of the same issues. We're here for you.

Hugs, Donna

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