Hey I'm new here... | Arthritis Information

Hey :) I'm Cynthia I'm 23.. and I just want to share my story :) (English isn't my first language)

It started for me 2 years ago with an inflamed joint in my middle finger... which lasted about 6 months then over a year ago the one next to it in my index finger... which hasn't really been gone yet.. and then about 6 months ago my 4th toe with probably 2 joints being inflamed since both my toe and my foot are swollen.. (at least that's what my reumatologist said ;)) and then 2 months ago or something a tendon in my shoulder got inflamed...

first I had MTX tablets.. which made me nauseous and didn't work properly.. so then I had to inject MTX so the dose would be higher and hopefully stop the nausea.. which it didn't so now I have Sulfasalazine (Salazopyrine) which I will start with tomorrow... I really hope that those wont cause as much side affects...

anyway right now all the joints that had hurt in the past and were (almost) gone are back... I'm a pro at not using either my middle or my index finger on my left hand... I haven't figured out yet how to not use them both... trying not to use my arm at least for stuff above my head is also pretty difficult.. (I usually only notice after its too late and the pain comes over the pain meds..)

I'm not sure if I'm allowed to say I'm in pain.. or if being tired/nauseous is from the meds (most people think I'm just lazy/pretending)

I don't think the people around me believe me when I say something hurts a lot... or they just think that when I say something hurts it's not as bad... I have no idea if the pain I feel is the same for everyone else... I mean what if I'm being a baby and everyone else with the same amount of pain wouldn't even feel it...

My sister has pain in her shoulder since 3 days ago.. and she had a drivers lesson yesterday... she said she didn't know if she would be able to drive.. I told her she would be fine since I knew the car would have steering aid.. and I drove in my moms car without steering aid and I could turn the wheel with one arm mostly without hurting too much.. and she was like "yeah but my shoulder really hurts" with emphasis on the really... I mean I have no idea how much her shoulder hurts.. but she was blow drying her hair using one hand to hold the thing and the other to wave her hair around...

Welcome, Cyn,

[You have an excellent command of the English language. I just wish some people in the US could write as well.]

First thing: Did your physician give you a prescription for Folic Acid? You should be taking 1-2 mg of Folic Acid daily.....this will really help with the nausea and abdominal distress. No one told me about it until I decided to give up MTX because of the stomach distress. THEN they told me. So ask your doctor for this.

I'm betting you ARE in pain. [And doubtful your sister is if she can use the blow dryer as you described. Perhaps she can not appreciate what pain really is.] Pain is something different for each of us. I can tell you that in the early stages of PsA my fingers really hurt from all the sausage-like swelling. I use a computer almost round the clock, so you can imagine how difficult this was for me in the beginning. And with the pain comes the frustration of not being able to use the keyboard or hold a fork or pencil in the right way. And because the pain is chronic, we get frustrated and that seems to add to the pain. I assure you, your pain is real.

Really, stay with the MTX and take the folic acid. [Or did you quit the MTX?] You didn't say what dose you're on, but generally most people find the best way is to start MTX at a low dose [5 mg] and increase 2.5 mg per week up to what your doctor is prescribing. Once a week, as you already know. MTX took about two months before it began to work for me.....but when it started to work, it worked. I've been on it for 15 years now and swear by it. As far as side effects, the only one I have now is being sluggish for a day or so after I've taken my weekly dose.

If people think you are pretending about the pain, show them this website. I'll be happy to describe in full detail exactly how the pain feels and how it's altered my life. Better yet, take a piece of wood and tightly splint it to a couple of their fingers or a knee and tell them to deal with it for a few days.....they might appreciate some of what you're going through.

Stay positive, Cyn. You're in lots of good company here. [Although I do wish the PsA people would check out this forum more often.....they all seem to be over at the RA forum.]

Sam

Sam12342009-11-27 12:28:54 (thank you :) I've spend a lot of time over the years (since I was like 14-16?) on English forums.. (since there aren't many good once in Dutch..) hehe I just mentioned it because when I was writing I didn't know a few words and had to describe them.. although it looks like I edited out those parts.. lol! (I had waaay more written before I posted ;)))

I've been on MTX for like 5 or 6 months.. first tablets and then shots.. (I'm not sure how many milligrams.. 2.5 sounds familiar.. I had 6 tablets a week.. and the same amount in the shots) and I take two 5mg Folic Acid tablets a week.. I already started the Sulfalazine tablets this morning :)

the sluggish feeling you said (at least I think from my experience that is what you mean) lasts at least 2 days.. and sometimes even longer.. I have trouble concentrating.. and that results in me not feeling like doing much which ended with me doing pretty much nothing at all... and when your supposed to be studying it's not good if you don't actually do anything ;)

Thanks for saying what you said about the pain thing :) I was just soo pissed off that she would say something like that.. but yeah she probably wasn't thinking about what she said.. Thank god I'm still able to type :) as long as I watch out with how I'm holding my hands anyway :) my fingers aren't swollen just the um? knuckle? *hopes that wont change*

Cyn2009-11-29 02:57:50Hi, Cyn,

MTX pills come in 2.5 mg each. So if you had 6, that's 15 mg. Glad to hear you're taking folic acid.

Yes, that sluggish feeling that comes a day or so after taking the weekly dose is the med traveling through the body and liver. I've learned to not do jobs that demand physical energy on those days. Usually I am able to shuffle things around. Whenever I've tried to push myself on those "down days" I get irritated with myself because I'm physically exhausted and then psychologically I feel whipped. So better to reschedule things.

I'm older and I would hate to think how this would affect me if I was younger.....school and studying and social life. For sure, I'd take my meds on a Monday night so that I'd be fine by the weekend!

I think more than any other part, the swollen fingers get me the most. They would swell to almost double the circumference. And painful. Trying to use the keyboard.....well you know.....you tend to slow down. I've found the trick is to not do too much at one sitting. It helps a little. Another thing......the mouse you use.....consider getting a truly ergonomic mouse if your wrist hurts.

The key is to control your disease and symptoms as much as you can. Not easy at all. But in time you learn that when you're in a huge flare, not to delay.....call the doctor and up the MTX with his/her permission, if only for a few weeks. If that doesn't work, consider getting Kenalog [cortisone] injections in the hand or fingers. What relief!

Keep the positive attitude, Cyn!

Thanks for the reply :) the problem is that its not just the physical stuff that I couldn't do... I couldn't think straight either... and that is something you really need when you study.. lol
but then if I take the stuff in the weekends I'll sleep all weekend and that's not really fun either ;) I'm just hoping the Sulfasalazine kicks in soon.. and that the dizziness is going to go away again ;)
Cyn,

I understand. There are many of us on this forum who own a business or work full time in jobs requiring acute mental function. So brain fog is a problem for many of us.

Have you logged the brain fog? Does it happen certain parts of the day? Maybe you can work your classes and studying around it if you detect a pattern.

the brain fog is pretty much constant.. and incredibly anoying! getting worse now on the Sulfasalazine.. I can't even think of names of people or other stuff that I know I should know... Well I'm blonde and over age 60, so I am able to blame my brain drain on being "blonde" or having a senior's moment.........but deep in my heart I know it's the drugs.

But what I've found is that you really can keep focused. Just break the studying up in to small parts. An hour here and then I can [e.g.] watch a tv program for half an hour. Then another hour of studying, then call friends for 30 minutes, etc.

I've also discovered that eliminating distractions helps, such as not answering the phone when it rings. Or not answering the door......or whatever.

Also, I work in a place where I am isolated....and not prone to interruptions by others or distractions. This allows better focus and prevents forcing you to multi-task.

This is what helps me to focus. Maybe it will work for you.

I'm a fake blonde female ;) so the blonde joke works for me too.. haha but still

I have to work in a lab in school.. and doing the experiments I can't just leave them and come back an hour later... also if I go do something else I get "pulled in" and "wake up" from that like 4 hours later thinking sh*t! I was supposed to go back and do some work... it's like I shut down from everythying I don't feel like doing (since it's frustrating to do something you can't)

you can actually not answer the phone or the door? I couldn't do that! yesterday I was in bed and someone rang the doorbel.. it was early and I didn't feel like waking up so I didn't go down... but then I was thinking who could it be.. maybe its this or that or whatever and ended up not sleeping anymore haha

I'm sooo afraid I won't pass on my project and have to do everything over again... I'm not making enough hours (officially it's 40 hours a week and I don't think I'm even doing 10...) and the stuff I do get to isn't good enough... I make too many stupid mistakes... :(

I'm sorry I'm glad these things work for you! and I really apreciate your thoughts (and hate that I can't just do those things and make it better..) Thanks for putting up with my ramblings ;)
God! just now I had to calculate 2.5 devided by 5! and I didn't know... I tried writing it down but still couldn't find the answer... and then I had to ask someone... :|

Try to do your lab work in the morning, if you can. I find my brain functions better at that time.

Just turn the phones off and let the calls go to voicemail and tell people that dropping by without calling is not acceptable and that you will not answer the door. I lead an extremely busy life in spite of this disease and the only reason I'm able to do all that I do is because I don't allow interruptions. When you explain to people that while you enjoy their company, your disease keeps you in first gear and that it's difficult to concentrate.....hence you're reducing the interruptions....they will understand. There will always be some who don't get it.......but then it's about time they learned.

:) I forgot to mention that I never get phone calls and no one ever comes to my house for me... (turns out the doorbell ringer was the drivers lesson guy for my sister)

I'll try the early thing next week :)
Will be anxious to see how it works out.yesterday I had an introduction day at the hospital where I'll be doing my project.. I had to be on the train at 6 in the morning and I was home at 4 in the afternoon... we spend the day walking around the hospital and sitting in chairs that were terrible! I sat on that chair for 10 minutes and my ass already hurt! so I tried sitting askew in different ways.. but that meant having my feet in weird positions which hurt.. and then walking all around the hospital hurt too... since "normal" people just walk stairs...

when I got home I slept for 2 hours before dinner and went to bed early... but then when I woke up this morning at 8 I didn't feel good.. my head hurt I was really cold and my stomach hurt... I took a shower and still couldn't warm up... so I just went back to bed and slept till 1 in the afternoon... so yeah.. lol I'll try again tomorrow ;)

I really hope I just caught a virus or ate something wrong... and that it had nothing to do with yesterday... because I'm going to 2 concerts on Monday and Tuesday evening.. and spending the night in a hostel.. so not getting much sleep and probably spending the Tuesday shopping in Amsterdam... I have to get to school on Wednesday because I'm alreaddy missing those 2 days.. (which means I have to get to school after waking up in Amsterdam.. :S)

Being young is such an adventure. However, in order to succeed at being in control of this disease it's important to learn how to pace yourself.

By the way. I just received the results from my quarterly blood tests and my Vitamin D is way below normal. In fact, I expect the endocrinologist to add a diagnosis of osteomalacia to my list of diseases. It would certainly explain why I've been exhausted lately and sleeping almost twice as much as I used to.

I did some research and found out that Methotrexate and corticosteroids interfere with the absorption of Vitamin D. If this is the case, it took a look time for this to happen. The good news is that this will be resolved with Vitamin D injections.

So get your Vitamin D checked periodically [once a year???]. And learn to pace yourself.

I really should get my vit. D checked... I read about that too.. (I need to get extra bloodwork too I think since I've been bleeding longer and getting bruises..)

I hope the extra vitamin D will help you!

I'm really bad at pacing myself... especially if it's like monday.. everyone is expected to be healthy.. and you can't see that I'm sick... everyone just assumes I'm lazy.. and if people tell you too many times to "just do it" and "don't be a baby" you tend to overdo things ;) :)

I did wake up early yesterday and today and went to bed early to compensate... but I'm soo tired! and feel sickish (nothing too bad just anoying ;)) my concentration seemed to be a bit better though not perfect.. (which today actually was a good thing since my teacher was there and he could actually see that I couldn't find my words lol)
Cyn2009-12-10 11:50:43For me the 400 IU's twice daily of Vitamin D didn't help. In fact I got worse. Don't know why.

So yesterday I saw the endocrinologist and we're doing a different treatment:

50,000 IU once a week for each of 8 weeks. Then 50,000 IU once a month.

Cyn, you really need to learn to pace yourself if you're to gain control over the disease. I can't imagine what it must be like to be young with this and having to exert a lot of self-discipline. [I wasn't diagnosed until I was in my 40's and life was pretty settled.] But trust me, in time you'll become an expert in time management.

What worked for me in the beginning was to make a list with two columns: Energy Killers and Energy Savers.

Energy Killers: Shopping, parties, rushing around doing errands and getting in and out of the car, airports and travel......

Energy Savers: Computer time, going to the movies or spectator sports where I sit still, classes, meetings.......

I didn't include exercising [walking] on the lists because it is a necessary evil. It's true: use it or lose it!

I generally wouldn't allow myself more than one "Energy Killer" every 48 hours if I could help it. Hard to do, but it paid off.

I know exactly what you mean about looking healthy.....I'm sure some people think I'm lying about being down and out with autoimmune disease. It's not until some of them experience it for themselves that they appreciate what I go through.

One thing that helped me was to explain to people I'm around that I do have an autoimmune disease. I found a good website that explained exhaustion from such a disease and emailed these people a link. I made sure it was from a good medical source. I won't say that it convinced everyone, but at least they were aware and gave me the benefit of a doubt.

I don't have a problem with telling people that I cannot do something. I can't tell you how many times I've wanted to do things and had to say no because I knew that I couldn't afford the consequences.

Out of curiosity, have you had the H1N1 shot? Are you planning to? I haven't heard anything about H1N1 in the past 3 weeks or so - I'm guessing it's peaked out. When I was talking to my endocrinologist yesterday she mentioned that two of her kids had H1N1 and she gave them Tamiflu immediately. Also, if you've had the pneumonia shot you are ahead of the game.

Sam12342009-12-11 17:43:51So I guess going to a concert of Maria Mena 2 days in a row and sitting outside in the (almost) freezing cold for atleast 2 hours isn´t a good idea?.. lol I cant do the pacing myself thing.. I know Ill be dead on wednesday and probably the rest of the week... but it´s almost christmas vacation so I´ll sleep then.. lol

all the people around me already know... but I´m not going to run around and tell everyone I´ll only meet once.. and those are the once that expect me to keep up with them...

I had the H1N1 vaccine :) and the regular flu one... I didnt get a pneumonia shot..

the problem with your list is that everything I *like* doing would be on the evil list... which means I wont be able to do anything I really want to... and honestly being exausted for a week after tonight and tomorrow sounds waaaay better then not going and sit at home...

(this board somehow goes into search mode when I type a ´ (copied that one) which is really anoying! lol)
oh and I forgot to add.. I really hope the high dose of Vit. D works for you! good luck with that! Cyn,

I hear you [about the pacing]. But as sure as I'm sitting here writing this, there will come a day when you will realize that you must pace. It doesn't mean stop doing things. It means not to do too much on one day. But right now you have your young age on your side so chances are you can "burn the candle at both ends" for several years yet. Just do yourself a favor and make sure you schedule "down time" in your calendar. You really will need this.

Sam12342009-12-15 08:59:42:) yeah your probably right :) but being this tired and in pain like I am now is still totally worth the 2 days I had! even if it lasts for weeks to come... it was so perfect :) and amazing ;)

I have christmas vacation now so I can do nothing for 2 weeks ;) (except for the mandatory christmas stuff ;))

So you see? You're already managing your disease. You opted to go on overload for a couple days with the idea that you're going to recuperate during the holidays. Fair enough.

Like me. Right now I'm wiped out - big office party today, had several business appointments miles away. I am wickedly tired. But tomorrow I'm going to vegetate in front of the computer to make up for it. It's like a savings account [most of the time]. You take it easy and it's like putting money in the bank. Then you have some fun and withdraw some of what's in the bank.

You still need to do fun things no matter what, for if you vegetated all the time you'd be ready for the funny farm. It's all in making deposits and withdrawals.

Do you find you feel better or worse in the summer/winter?

ok where did my reply go?

I'm not sure if the summer or winter affects anything... I'm in pain now but I wasn't in summer since it didn't really start yet...

It's weird for me. I live in southern California so the weather is pretty decent year round, although lots of rain [usually] from December through March]. Ironically, I get my flares right around February......or at least that's what had been happening for years. This year my system has gone bonkers.