I was 27. Just kind of wondering if its totally random when it hits or if more ppl se it later in life and i was just oh so lucky to have it so early. ya know and maybe if anyone got it as early as i have 20yrs down the road what is it like. just something i ponder from time to time.
Hi I was diagnosed at 19 and I’m now 23.
I always wonder how I’ll be i later on too.
Ive been wondering lately about how I’ll go
working full time as it progresses with time
. I find it difficult because my work doesn’t
understand when I am sick all the time and
have limitations it’s hard to explain when it’s
not always visible to other people because
with time you become good at hiding pain and
No one expects a 23 year old to have physical
Limitations. Sorry to sound so gloomy. 
I think we all wonder about this regardless of our age. I think it’s just harder to think about when you’re diagnosed at a younger age when we have so much more life to live. Mine started when I was around 28 and was finally diagnosed when I turned 32. It was when I got so painful that I could barely move and had to stop working that the doctors finally started to look into other causes. When you are that young and in the prime of your life that people just don’t understand what’s bogging us down. It’s frustrating too because we push ourselves to keep going because we have so much to live for at this point in our lives… ie, young families, new homes and mortgages, career advances and job opportunities. I’m not saying that when your older it doesn’t effect you as much but atleast you are more established at that point and have been able to live longer without the burden and frustration of having to get by and make due with the disability it causes. All the best to the young club and their battles!
Okay I'm about to say something Insensitive and most assuredly NOT PC. With the exception of some young people who get acute young which has always been the case, MOST of us old farts have had it since we were young too. It strikes in the 20's (statistically anyway) We were either too dumb, to stubborn, or too accepting to have done anything about it. In many cases for us in our 50 and 60 there wasn't anything except pain killers and accusations of "malingering" pain treatment without disease treatment has lead to a whole NEW disease for many (fibro or Hyperanalgesia) that lakes even the most minor irritation exruciating.
Still because of our years without treatment we have developed a lot of secondary problems, permanent joint damage, swapping old joints for new ones and so forth. had we the opportunity for the treatment young folks being diagnosed available to them our lives today would be much better, not to mention how much better the last 30 years could have been.
When I hear a young person who has had treatment available and says I duuno "what about the side effects" I'm scared.... I just want to reach through this screen, grab them, and shake them. (especially since most of the side effects are rare and not near as "bad as purported on the "net" by attention seekers and certainly far LESS than the disease) (Of course I have worse ideas in mind for docs who won't treat the young looking for more evidence and evn more than that for insurance companies (and governments) that will only accept permanent Damage as evidence of the disease)
What I would give for the opportunities the "young have" or the last 30 years that could be as realtivly good as these years. I'm fortunate that I AM responding to treatment. Too bad I couldn't have had that opportunity years ago.
Like I said insensitive and totally non PC.
well all i wanted to know is what age it hits lol im greatful for the tretments and would eat a plate of crap a day if thats what it took to keep me feeling good
My Dear friend Alleycat,
I am agreeing with lamb and will tell you that I spend an exceptional amount on the Fibromyalgia site as well as here, because the kids coming on there are as young as 14, knocked flat! I am NOT on there for me, I am trying to get them to a Rheumatologist NOW! All of them! In my opinion they are undiagnosed.
Now we laugh, joke, once in a while, we have to, so many hours of our day are spent here, or there because we are NO longer as productive as we want or need to be, we are not only providing a shoulder but we are trying to give you experience and info to get you where you need to be, and to stay there.
Aromatherapy and peppermint oils are wonderful BUT they will not stop irreversible damage! It is not just about what all of this takes from the young, it is what it takes from the LIVING!
You know, lamb and I were here the night you came in. We know how sick you are and how loaded down with meds you are, how you starved your body with the vegan thing, we've all gone through it. lamb is right again about us having it in our 20's, I can look back and see it, but fought through. So these are the hard heads who went the hard road, because it was the only road.
I am beginning to respond to Enbrel at 7 weeks, lamb just told us he felt it help him with the first shot. I went through the Sz, then the MX, to get here, some have to go further still. But to have HAD the opportunity THEN, we would be entirely different people today!
We know how bad you feel, stay strong, be as proactive as you can, learn all you can, the more you know, the better treatment you will demand, the better you will insist your Doctor is, or you will search out another, just remember they have been in school a long time with a huge infux of continuing ed demanded of them. Listen to them, take the meds, be as well and as young as you can possibly be!
We are all here for you!
SK
Well the simple answer is my first hospitalization was at 23 for 5 days of traction..... Now there's a treatment/diagnoses everybody ought to experience at least once.......
After the traction (which is in and of itself painful) "stretched out your spine" they would then do a spinal puncture and inject dye for xrays. They seldom used any local because they thought it would effect the nerves. After the x ray's (if you hadn't passed out) they would remove the dye cannula. They hadn't learned about blood patches yet so they would sand bag you in position for six - eight hours hoping you wouldn't have a spinal leak (only worked about half the time) If the spinal headache came they would put your bed at an angle head down to fill your brain up with spinal fluid. they would not give you pain meds (most of the time) because they felt it would slow the healing of the puncture wound.
If they didn't find anything (which rarley they did) then you were a drug seeker. BTW this was in the 70's. You were subtly trained NOT to seek answers
Talk to us, Cat!
SK your opinion matters...... That being said you are not a doctor. You cannot decide they (the 14 year olds ) are underdiagnosed. You do not have a medical degree. It is your opinion only and to advise young teens that they should see a rhuematologist is over stepping boundaries. You may be instilling fear in them for a disease they do not have. You may be cousing problems in already stressed out teens. Never mind their parents. Not everyone is underdiagnosed. Yes PsA is a difficult disease to diagnose but that does not mean doctors world wide are missing diagnoses.
Lamb in the 60's they considered all pain patients drug seekers. It is a travesty that so many of us suffer with pain for so long . I was fortunate, I did not.
SK said:
My Dear friend Alleycat,
I am agreeing with lamb and will tell you that I spend an exceptional amount on the Fibromyalgia site as well as here, because the kids coming on there are as young as 14, knocked flat! I am NOT on there for me, I am trying to get them to a Rheumatologist NOW! All of them! In my opinion they are undiagnosed.
Now we laugh, joke, once in a while, we have to, so many hours of our day are spent here, or there because we are NO longer as productive as we want or need to be, we are not only providing a shoulder but we are trying to give you experience and info to get you where you need to be, and to stay there.
Aromatherapy and peppermint oils are wonderful BUT they will not stop irreversible damage! It is not just about what all of this takes from the young, it is what it takes from the LIVING!
You know, lamb and I were here the night you came in. We know how sick you are and how loaded down with meds you are, how you starved your body with the vegan thing, we've all gone through it. lamb is right again about us having it in our 20's, I can look back and see it, but fought through. So these are the hard heads who went the hard road, because it was the only road.
I am beginning to respond to Enbrel at 7 weeks, lamb just told us he felt it help him with the first shot. I went through the Sz, then the MX, to get here, some have to go further still. But to have HAD the opportunity THEN, we would be entirely different people today!
We know how bad you feel, stay strong, be as proactive as you can, learn all you can, the more you know, the better treatment you will demand, the better you will insist your Doctor is, or you will search out another, just remember they have been in school a long time with a huge infux of continuing ed demanded of them. Listen to them, take the meds, be as well and as young as you can possibly be!
We are all here for you!
SK
alley cat I was diagnosed with PsA at 49. What does it matter at what age or what you are like in 20 years.
What would you do different if you were healed now?
Knowing what you know now what would you be doing if you were healthy?
What would or can you change to live up to these first two questions?
I try to live my life like I am healed and healthy. I just do everything I can and don't worry about the I can'ts. I do it as much as I am able. In 20 years I will be 74. I may be walking, I may be bedridden, I may be just like I am today. I may even be on the wrong side of the grass.
But today. I am here I am sitting in the sun. I am dreaming about my grandkids, I am crocheting a blanket I am living today. Tommorrow is another day.
What is great about your day today?
E.
You are correct (and fortunate,) and here's the funny part. I was working the ER's in those days even though I had incredible pain from time to time myself, "the drug seekers" did come in on a regular basis. I pitied them, but not because of their pain. I was thrilled to have learned to deal with the pain other ways. I still am. We are at a dangerous point right now. For a number of years the pendelum swung the other way and pain management became nothing more than dispensaries for opiads Everybody was getting pain drugs for everything. Now they have learned that was a HUGE mistake and that in the end they were creating more pain than they were helping. Now the pendulum is swinging the other way again. I don't propse to have any answers other than to suggest any disease management program concentrate FIRST on the disease and not the symptoms. This is how a good Rheumy operates (but often fails to communicate) A good friend of mine is medical director of a good sized health care center here. Hes one of the "bad guys" who won't treat pain without a diagnoses BECAUSE as he says he knows the result will be more and more pain that is worse and ultimatley uncontrollable. rarley does a day go by that he doesn't see someone exactly in that state (he's pretty close to being in the school that fibro is not a disease but rather a CAUSED condition) The fact is that those patients that will adhere to the "program" his pain management program lays out. have rarley NOT been helped significantly.
2trees said:
......Lamb in the 60's they considered all pain patients drug seekers. It is a travesty that so many of us suffer with pain for so long . I was fortunate, I did not.
wow im kinda sorry i stated this topic... i know it doesnt matter i was just wondering sorry i ask questions.