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For years I've been not feeling right, experiencing aches in my joints that can only be described as if you translated the sound of nails on a chalkboard into pain. It hit both of my ankles, knees, hips, and wrists at the same time. Sometimes it was just one set of joints, sometimes all of them. I'd occasionally get a fever or chills, and recently when I'd get a flare up, I'd experience a rash on my face. I also have been very slow to heal from cuts, with simple scrapes taking a month and a half and leaving scars on my body.
Over the years I've been to countless doctors. I've been a part of the CL community for 7 years now, and I've been to no less than 11 doctors trying to figure out what's going on. I often was told "I don't know", or told I MIGHT have something that didn't line up with the symptoms. I was put on a bunch of different medications, and frankly was made to feel like I was either crazy or making it up.
Today, I finally got some answers. I went to see a rheumatologist, and he did the standard exam. He then went and started feeling my joints, and asked if anything was tender. When I pointed some of the areas out that were, he jotted them down. After he looked at all my test results (x-rays, CT scans, blood work, etc), he said, "I know what you have."
I was shocked. I have been going to doctors for years, and no one was ever definitive with what I had. Apparently, I have palindromic rheumatism, which is in the process of turning into rheumatoid arthritis. This is no doubt a bummer to hear, as RA can be quite severe, and it's affected my mother-in-law severely over the years. The doctor said that with the inflammation he can feel and the frequency that I'm having the symptoms, I'll have to go on an immunosuppressant, which will keep my body from attacking my joints.
It's all quite heavy stuff, but I'm honestly so happy to finally know that I'm not crazy and I wasn't making this up. I wanted to have somewhere to write my thoughts down on this, and I thought I'd throw them down here, as I've grown to be friends with so many of you over the years. Moving forward, I'm gonna continue to keep working out and doing what I can to keep myself relatively healthy. It's going to be a slog some days, but isn't it that way for everyone?
Anyway, thanks for reading my ramble. I hope none of you have to put up with something like this.
5 CL-Ed, sharpe, coolsongss, WaroftheGods, vomvom12
Hey Dustin, I'm devastated to read all that buddy, but I also could understand why you're kind of relieved of at least knowing what's exactly have been wrong with you.
The right diagnosis is the first and probably the most vital step of any treatment so let's hope it would make you feel better from now on buddy.
In a tough times like these we usually realizing how fragile and fleeting we are as a human beans and all the daily problems we're usually so stressed about starting look so minor and stupid
I've never had anything so serious.. so I'm surely not in a position of giving you any advice's but it's even more impressive now that you've been started exercising with all the body pains you're having...so keep being active pal, listen and do what the doctor's ordered you(those who know what they're talking about anyway) and try spending more time outside if you're able, just a walks in fresh air, not need to pushing too hard, it's amazing how the fresh air could influence our bodies and minds if we get that in big dozes often enough.
What happened to your mother-in-law doesn't mean it would be the same for you pal.. and look at it as a hardship of you will to make you stronger if you wish which the fortune brings to you....you're still a young man, head up buddy..do the right things and those that make you happy of course, it would be all good for you in the end, I'm sure.
Will await to hear a better news soon, bud.
2 barbadosslim93, vomvom12
that's bad news ... i do not know you very well, but that doesn't matter...
i am sorry to hear that. the only positive thing is that you know now what is going on, as sharpe has already said...
i wish you all the best
Wow, that's intense Slim but understandably a relief to finally receive a diagnosis. At least now you can work out a plan of attack to minimise the pain and discomfort. Sending lots of positive thoughts your way.
Chin up mate, that is both good and bad news I guess. At least now you have a diagnosis and can get some treatment for the right problem. It's good you're working on your diet and the exercise and getting fitter too, it will all help.
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Thanks for the kind words everyone. I woke up this morning, dropped my kids off at school, and hit the gym to blast away at an Arc Trainer. Figure I know now how important it's going to be to keep myself moving and healthy moving forward, especially with the prospect of those crazy medicines I'm likely to be taking here in a week or so.
5 CL - klaw, sharpe, coolsongss, WaroftheGods, vomvom12
Oh, I was sorry reading your words, but later part, I think that you finally came to know about your problems, and good to see that you are going to work it out.
I know those aren't really good news but I do think that it's better to live knowing what's wrong than constantly trying to figure it out. I wish you all the best!
It must be one heck of a relief finally knowing exactly what it is that's been making you ill , sorry to hear about it but you have the right attitude and that is most powerful healer and medication available the power of mind so keep that positive mate and I am sure it can only improve 👍
"The right diagnosis is the first and probably the most vital step of any treatment so let's hope it would make you feel better from now on buddy"
Sharpe is absolutely right, going off my own experience, while not intending to down play yours here slim, mines in the past. But i went through 6 psych assessments before a dr finally diagnosed me with amphetamine induced paranoid psychosis with delusional thoughts and visions. From that appointment moving forward, I was able to come to terms with everything, get the help I needed, and today it's a thing of the past.
My point, although it's bad news for you, and I'm sorry to hear about that buddy, it was happening whether you knew what it was or not, right? Now you know, so now you can take the necessary steps to live with it comfortably or as comfortable as possible at least, and do the right things for the situation you find yourself in.
Trust me, things will be better for you when everything sinks in, and you have a plan in place.
One more quick note, good for you for sticking with the exercise man, it would be very to just quit given the news you just recieved, instead it sounds like you're jumping on it even harder and using that as motivation, that is no small order to do, you should be proud if yourself for it.
3 barbadosslim93, CL - klaw, sharpe
Thanks man, it means a lot. I ended up getting a call from my doctor today. All the blood work is in, so they ended up giving me my prescription, which is called methotrexate to start treating the stuff. I have to go get blood work every two months to keep an eye on everything.
I did some research on the medicine today and it looks like its a heavy-duty deal. The lady from the doctor's office was telling me about some of the side effects, and she went on for what seemed like forever. Needless to say, I'm pretty nervous to start taking it, but I'm hoping it'll make me feel better in the long run.
4 CL - klaw, sharpe, Lambino, WaroftheGods
Woofta! I had my first dose of medicine on Tuesday, and thought all was going well until yesterday. I was working and had been feeling really tired, and then all of a sudden I felt like I had the flu!
It was so bad and lasted until I went to bed. I woke up today feeling better, but man that was crazy. I hear the effects only happen the first couple of times you take the medicine, so let's hope that's the case.
2 sharpe, coolsongss
That sound weird...yeah hopefully your body would get use to the meds after the first couple of doses Slim...be strong man!
I never read the side effects portion of a prescription, what I don't know can't hurt me, until it does hurt me and I need to refer to the side effects section to figure out how best to deal with whatever ailment that may be lol
Ignorance Is Bliss
Ha-ha...Yeah I think we could see the results of those action of yours now Kris... 😜
But I guess you have a point there...no need to worry about anything cause most of the side effects wont even appear to some people...and hopefully not becoming side defects 😉
is this a daily medication you have to take? now after a few days of taking the first portion how strong are the side effects on you
after reading some new posts in this thread i googled the name of your disease and i realized that it has to be the same disease my grandma was fighting with. she had a nother issue a major depression and some kind of panic attacks... all together a horrible mix of issues. and because of her depression she was sitting on her couch and watching tv for her last 30 years... almost no exercises and this had a very negative impact on her rheum.
I just wanted to encourage you to keep moving and do your exercises to keep your
agilitya & mobility as long as possible
2 CL-Ed, sharpe
Hey vomcom12, sorry that I just saw this.
I have to take the medication once a week. I feel the effects a few days after the dose, which isn't too bad. Some weeks are worse than others, but I keep moving and doing stuff.
I do have a small update for everyone
I had my follow-up today. The doctor officially did diagnose me with Rheumatoid arthritis after they found the medicine does help. They're upping my dose to 6 a week to try and completely knock out the flare-ups. They're also putting me on different medicine, to manage side effects, which will hopefully not make me feel as queasy.
Next follow up is in October, so hopefully it's all better by then!
5 CL-Ed, CL - klaw, sharpe, WaroftheGods, vomvom12
Nice to read you're relatively good Slim, hopefully your condition will just get better in the next weeks, awaiting to hear some good news from you 👍
hahaha yeah indeed a fantastic reaction time...dont worry about that...
hope you doing well and that the side effects do not throw you out of the way too much.
i think it is very important to keep up a positive mind at rough times in life ...3 years ago i was fighting against alife-threatening blood disease called ttp (thrombotic thrombocytopenic purpura) it is a very rare disease so they put me on the cancer station...it was horrible to see this walking dead people all day long
on the one hand but on the other hand it reminds me all the time that it could be a lot worse...
so keep it up and enjoy life...
3 CL - klaw, sharpe, WaroftheGods
Well put vomvom12, I always keep that in my mind on the real bad days or times, that things can be worse, then think of what I have to be thankful for. It helps keep a positive mind.
2 sharpe, vomvom12
When I Found the personality types, this changed my paradigm a lot. Highly recommend you do it too.
barbadosslim93, I wish you the best on your treatment. While it's disappointing that the other doctors could not have found the cause of your symptoms sooner, at least you will finally get the correct treatment that you need. Best of luck.
Thanks newflorida, appreciate the kind words!
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