Hi to everyone - I've been looking in for a couple of days now, and what a friendly, supportive bunch of hero's you are!!
I've spent the last two days or so in floods of tears at the thought of this happening to me; then more tears of guilt for feeling sorry for myself (there are so many people so much worse off than me, I'm sure; what right do I have?)
I am very new to RA, and have not been dignosed yet. I haven't even plucked up the courage to visit my GP about it. I guess that would mean I've accepted it as a possibility; though I suppose just by posting here, I'm already doing that.
Having researched on the web (finding this forum in the process - thank god), and taking various related quizzes; I have little doubt that it's RA.
Is it true that this can show up overnight? I woke up with pain in my upper arm/shoulder one day a few weeks ago, just like someone flicked a switch! I couldn't do things like reach around to put on shirt or pull up my pants without at least wincing in pain, and mostly it's excrutiating. I thought maybe I'd 'pulled' something, and waited for it to go away.
It never did - the pain just varies a bit. The the other day my other arm started - exactly the same, only worse. I can't lift things with it most of the time, without some level of pain - again from mild to so excrutiating, I can't do it at all.
I have had 'noisy' and painful knees on and off for a few years, but not a real major problem), and all over morning stiffness for a few minutes when I get up. I also remember my grandmother had Arthritis - she had deformed fingers and a 'humped' back.
I know that RA is typically symetrical and that both sides of the body are usually affected at the same time; but as my arms didn't start at exactly the same time, but within weeks of each other; does that still 'count'? I don't have any obvious swelling or redness, but I am feeling 'warmth' and a general soreness in my shoulders and, and the really big 'ouches' when I go to do something (or sometimes just move). My shoulders also audibly 'click' quite a lot, too.
Just days ago I took my mobility for granted; what the hell happened???
You should definitely be checked by a doctor. If it is RA, it's not hopeless. I'm a success story at the moment. If was pretty tough for awhile, but my condition has improved dramatically after taking Methotrexate and, now, Humira. The first step is to get a diagnosis from a doctor you trust; then find the medications that will help. You may have to be patient, but don't give up hope.
Welcome...I'm new here too. It's a great bunch of people.
Alan
Hi there! I'm new here too.With stuff like this...Ones' imagination is usually worse than reality. It does sound like arthritis of some sort, and you should get it looked at. Call your GP today. When you are at your GP appt explain your symptoms and ask point blank if this arthritis could be RA.
Best Wishes for a good outcome.
Welcome Jemm......Alan and Zeebootee too (I saw your scrap book breifly eariler today; how neat!)
Jemm; I researched things very simular to you years ago before I was dx'ed so it didn't really come as a complete shock; but it's still shocking once it's confirmed. AND; you have every right to feel the way you do.....don't add guilt to your list of problems right not too.
I don't have much time for chatting right now; but I wanted to say hello to all of you and tell you how happy we are that you've joined us.
You'll find some much needed support and advise here as the days pass and I hope you'll all become active members of our little family here.
Welcome!
Jemm,
I agree with the others, you need to go to a doctor as soon as possible. It happen edthe same to me, I thought I have it but i didn't wanted to know , to come out.. If you have RA the sooner it is catch the better, you can get on a treatment and get less damage on your joints
This site is a great place to realise we are not alone.
Thanks to all! Encarni.
Jemm...Sounds like RA symptoms. Symptoms don't necessarily have to occur exactly at the same time on both sides of your body. But having symmetrical symtoms eventually is one of the criterion of having RA. You do need to get to the doctor right away. Hopefully, he'll refer you to an rheumy for further tests if he thinks it's necessary. If it is RA, the sooner you can get on DMARDs, which prevent further progression, and on some kind of pain medicine, the better. The earlier the detection and starting with meds, the better for keeping things at bay. Good luck to you. Keep us posted on your dx.
Susan
Thanks everyone - for your kind welcome, kind words and encouragement.......
I've been reading through many of the threads here, trying to come to terms with the obvious hell that this disease is - I thought I knew, but realise now that I had no idea at all......
I've never been good at going to the doctor except when I absolutely have to. (OK - I know this is one of those times). It seems to run in the family; all my family before me seemed to "grin and bear" it, only ever being in the hospital for a few days at the most before death. A very proud bunch, not wanting to be a burden to anyone I suppose.
How my poor grandma must have suffered (she clearly had RA among other things). She always made it clear she didn't want to burden anyone, and I relate to that very very powerfully.
I know if I have it, I won't be able to live with it for long, I'm far too proud and independent. I will NEVER accept having to depend on someone else to shower me or dress me - it would just be too humiliating for me to bear........
I've read some of the posts about the effect on the family unit as a whole, it's heartbreaking - I feel for everyone of you - those with RA and those having to live alongside it. I don't feel I can do that to my family, I don't want be the 'cripple', I don't want people to feel sorry for me, and I don't want them to see me miserable, and resentful, or suffering with the side effects of drugs that render me almost as useless as the disease itself - what's the point in that? I'd rather be dead. I DON'T want to have to deal with this - I want to be NORMAL......
Even worse for me, is the thought that my family won't understand, will think me 'lazy' or making it up. The thought that they will 'have' to take care of me; when it's ME that should be taking care of them. I hate it all!
I understand the possibility of remission, and right now I know I'm probably a 'mild' case compared to most. If I knew I have years as I am now; then I could live with that, with some pain management; even though I get very frustrated very easily at not being able to do something I WANT to do when I want to do it. Patience is NOT my strong point. I hate the thought that even getting diagnosed could take some time, then experimenting with various drugs in a effort to find something that 'might' work. I'm not a fan of drugs at the best of times, and avoid them at all costs. They often seem to simply create a 'different' set of problems.
I would hate wondering when, or even IF I'd ever get a remission - then if I'm that 'lucky' (ha), how long will it last? What happens after that - an awful turn for the worse??
I think that will be the hardest - not knowing how it's going to go - how will I feel next time I wake up - good, bad or somewhere inbetween. How the hell you all cope with that I can't begin to imagine..........
Am I going through the same thought processes that you all did at the start, or am I 'different'?
Whilst reading through the various threads, and individual experiences on the forum, I went from thinking "Oh god, I can't cope with this - I have to end it" (I never have been a poster girl for optimism), to "It's not so bad, I can do this", and back again. But I think ultimately it will be the former.....
I don't really have anyone I can talk to about this (outside of you wonderful people). I don't want to burden my family with it, especially as it's not 'official' yet. I don't have any close friends at the moment, neither do I have any extended family nearby, they are all thousands of miles away - just me hubby and the kids really.
My husband has never really been there for me on an emotional level when I've needed it, and as a result there is quite a lot of resentment. Don't get me wrong, he's been an amazing provider in the material sense, never really complains, and has put up with my fatigue for years. He's had his own share of health issues in the form of high blood pressure and cholesterol, which led to a heart attack a few years ago - yet he is in amazing shape now, and still has enough energy for the two of us and then some! He works away all the time; thousands of miles away for about two weeks at a time, so I am mostly at home alone anyway. I'm very fortunate in that I don't have to work outside the home, but the downside is that it only adds to my isolation.
I'm 45, have three great kids - two are grown up (aged 19) and working full time but still living with us. My youngest just started junior high (14) and has started to take the bus by choice (kind of fortuitous as I found driving painful this week). My home - and the one that we moved from and was supposed to be on the market months ago, is in a huge mess due to renovations, which I'm supposed to be doing a lot of while hubby is away - but now I find it too painful a lot of the time. Just a few months ago I tiled my laundry room floor, and was looking forward to doing so much more.......but that seems impossible now
Today, I seem to have full range of motion again in my right arm, with only a slight twinge of pain here and there, whereas yesterday, I couldn't even pick up the pan of potatoes when I was making supper.
Now I feel like a fraud .....
Sorry I've waffled on so long, but it feels good to be able to say what I feel inside with such freedom and anonimity......Thanks so much for 'listening'..............now here comes the guilt for 'moaning'
You're not moaning!!! :) That's what this place is for. Everyone here is at a different stage. Some of us are lifers, some of us have had it raid our lives like a freaking bandit. It's all relative. If this is what you feel like, THIS IS WHAT YOU FEEL LIKE. :) We accept it. I promise. I can't imagine being 45 and having it hit you...I'm a lifer...I think that makes me more optamistic about it all. Quite frankly, I don't know any different! You really do need to see a Dr. The sooner you get in, the easier it will be to treat. To me it sounds like, at least for a while, you might be able to get away with some basic meds. And your whole world would be a lot better. You don't have to be a "burden" :) First of all, try not to look at it like that. Family and friends are SUPPOSED to care for you. Second, there are lots of ways you can rig things around the house so that YOU can still be in control. If you find yourself struggling to do something, just ask. I have a lot of inventive ways of getting things accomplished and I'm 100% sure I am not the only one here with ample ideas. :) Wish I could give more advice...but for now I want to save some finger dexterity for other posts! LoLWelcome Jemm!
I'm new to this site too and to me this is my "safe" place. These people here are wonderful and someone is always here to listen. One thing I would reiterate is to get diagnosed as soon as you can and if you do have RA, start the disease modifying drugs immediately. I think you really do have to live one day at a time with this, as simple as that may sound. For me, any more than that would be overwhelming.
Hi Katie, How are you todayWho, me? Or is there another Katie?
***I never claimed to be the brightest crayon in the box....**
Hi, Jemm, and welcome. Yes, it can be a sudden onset. In my case I woke up one morning and there it was! Full blown RA with pain everywhere. After 8 months and some trial and error with the meds its partially under control so now I feel a lot more positive than I did a few months ago.
Many of us share your fears and frustrations so don't feel alone. Hope the meds work for you.
hi jemm i am new as well and have found much comfort and knowledge here. I was actually dx in June only by accident. I was in my gp office for something else and mentioned my hands hurting. I am 43 I told him I know it is just plain ole arthritis what can I take. So he told me tylenol but let me check for lupus or RA. This was on Thr and tues I was sitting in a RD office and later that night I found this website as I was desperatly searching for info on RA. I cried for 3 days straight, I too an very independent and my husband works alot so I can stay home so my family relies on me to get stuff done. I am still struggling with the guilt and my own self doubt that maybe this is only in my head. How can you go from perfectly fine to within 2 weeks hobbling around and so tired you just lay on the couch. anyway sorry enough of my sob story like I said I am still dealing with it. I was so angry but it is getting a little better as I have been here reading everyone's stories I see that there is hope and if we can get the right meds I could be fairly normal again.I have committed to make the call on Monday (so feel free to keep bugging me about it in case I chicken out - I'm good at that).
I'm pretty sure it is RA, I did a lot of research first, but understand it may not be (though the symptoms are bang on and I even see a couple of very small changes in a couple of my fingers on left hand in the form of bumps on the side of the joints). I had trouble getting things from the shelves in the grocery store yesterday.
What I hate the most is the uncertainty of how it will progress, because every one is different; and no-one will be able to tell me that - I have to wait and see!
tingram - I know it's not a death sentence - but in a way it is; it's death of life as I knew it. I really admire all the fighters out there - all of you that are able to be so positive and carry on regardless. That just isn't me. I don't want this, and I refuse ot live a life of misery and pain. We don't even put our pets through this sh*t, we put them out of their misery!
Is Doctor Kevorkian still in jail???
2angelsmom - Go ahead and tell your sob story - it's what this place is for as I was told right away when I apologised for moaning. You're allowed to!! Maybe we will be able to find the right mix, and at least cope with it. My dream is that I will take some pills and feel "normal" again (there - I'm being positive....lol)
My biggest concern of all is my poor mum - she's so far away from me and I have been talking to her to try and get her to move here so I can take care of her as she ages. It's a matter of time til she needs that, as she is already starting with health issues and I worry about her living alone. Now I'm terrified that I won't be able to be there for her when I promised I would be.
You can do it! The sooner you tackle it, the more "normal" you'll be able to live. I make one suggestion. Stop worrying about what you can't do, and stop right now. In my opinion the worst thing that ANYONE being diagnosed with ANY disease can do, is focus on the negative. I know it's hard, and it really sucks, but a positive attitude can make all the difference! :)
Bless you Katie - but you're SO much better at it than I could ever be!
Maybe it's just the newness of it all, and I will get over it and start fighting, but right now I'm wallowing in self pity - can't help it.
It's okay! The lifer thing is really different. Look at it this way...I don't know any different. It's like being born without legs. It's not like I could look back and go "gee, remember when I could walk?" you just don't. You deal, cause hey, that's your LIFE man. And it's cool. I'd be lost with out it. LoL
The newness will wear off.....eventually. There's several newbies on here that are struggling just the way you are. So don't feel alone! You guys should have a pow-wow. Lol It'd make ya feel better :)
Just hang in there! If nothing else, stay here. At the very least you can dump and then feel better about it all, and no one here will judge you either way for it.
It's time to get out of work now...I must meander back to my car! LoL wish me luck! Haha
Hi Jemm, Everone has given you good advice so I won't reitterate. Welcome to the board. There are over a hundred different kinds of arthritis and many of them are the autoimmune variety. You sound like you might have RA or one of the other autoimmune kinds of arthritis especially since you have a family background of it. Still, RA can be mild, it can go into remission, and it can come and go. The fact that it migrates to different parts of your body is normal. So is the fatigue. You need to see a rheumatologist to be tested. It took 8 years of going to a rheumatologist and continually being tested before I was formally diagnosed. I actually felt relieved to have a name to put on my illness. RA is not the disease it used to be. There are amazing new biologic medicines that can make a huge difference in your prognosis. Not that many people with RA end up in wheelchairs with completely crippled hands. The last 8 years have seen amazing improvements in drugs and as they understand genomes, the prognosis gets even better. You will feel a lot better when you know what's going on. Many of the people on this board are on the more severe end of RA,but there are many others with RA who are not. All of us, those with mild and severe RA are people first. We have famillies, usually jobs of some sort, hobbies, basically lives. The RA is secondary.
I look forward to following your prognosis and welcome you.
Hi Jemm! First of all let me offer you a big HUG!!HI JEMM!! You definitely are not alone. Everyone of us has been there. Get to the Dr. A.S.A.P. AND do something about it. We are all pulling for you!!!
CinDee
Jemm,
I can relate to how you feel. It is a scary disease. I've been pretty severe from the start and it has dramatically changed my life. But even when the pain is the worst, I'm not about to give into this disease.
I could count all my losses from RA. It would be very easy right now because I am going through the process of filing for disability. When you fill out all that paperwork, it sounds so grim because it is "I can't do this, I can't do that." It's the truth, but I hate writing it down. It's hard to read the doctor's notes that say, "No improvement is expected." But that's what he has to write to get disability.
But going on disability is not the end of my life and my friends here know that it was a terrible decision for me. It is a major change in my life. But I have been fighting trying to keep up with perfectly healthy people on a constant basis. No, more, I've been competing with them and outdoing them most of the time even with this illness.
You'll find that there are a lot of overachievers here. A lot of us just can't give up.
I cannot do a lot of things I want to do. I used to go for walks to think out my problems. I can't do that now. So, I write a lot and I've discovered a lot about myself. Eventually, I'm going to get surgery done, and then I'll be able to go for walks again. In between, I've found I have such a love for writing that is an obsession with me. I have to do it.
But I have problems with writing. RA has damaged my left shoulder to where I have limited time on the computer before I hurt like crazy. But I'm not going to give up. I write in notebooks, I have tape recorders and I'm going to learn to use this speech recognition software. Somehow, I am still going to pursue this.
But I cannot work at a regular job any more. My fatigue also weighs in. But it doesn't bother me as much as you would think. If I get disabiltiy. I can write at my own snail pace and enjoy it. I can do it in my own home and I can see something besides the inside of a cubicle or being stuck in traffic.
I am also very independent and I live alone. There are times when I wonder if I am going to need extra help doing basic things. Well, in a way, I am already at that point. I am going to have to apply for Long Term Care. But that doesn't mean I have to go live in a rest home. I need it for the medical care and sometimes a little help with my yard work and harder housekeeping chores.
In the meantime, my son very graciously comes over and does a chore here and there. He is very proud to do it for me. And, I am so proud of him for just doing it out of the blue. A lot of times, I would come home from work and find out that he had swept and mopped the floors, vaccummed, and took out the trash. He just did it to make me feel better. It is his gift to me.
That's how you have to start looking at others who are in your life. You have to leave open doors for them to give to you. You'll find ways to give back to them. For my son, long conversations where he figures out his life are what is important to him.
I've found that I have a lot of value to the people in my life. Listening and opening you heart is a precious gift that you can offer. Your physical capabilities have no bearing on that.
One of my best friends in the world is a 17-year old girl with cerebral palsy. She's the daughter of my best friend so I've known Jessi since she was about 2. She writes me almost daily now and I actually talk to her more than her mother. Jessi has always been like this bright light. She can't walk and she doesn't talk clearly, but she is wonderful. And, loved, that girl is so loved by not only family but friends like me.
You have to get this out of your head that you life is over or worthless or that you cannot deal with this. You can and you will. This illness takes strong, independent people to survive it. You will become an example to other people of how to live life the best way possible no matter what the circumstances that are thrown at you. You don't realize it now, but you have the potential to become other people's hero. You are just down because the journey looks so long and difficult.
But amazing developments have happened even in just the last two years. My doctor is offering me treatments that they just didn't have when I first got sick. So, don't think you are going to end up not being able to take care of yourself.
A lot of my problems that are putting me on disability are caused by OA and FM. If I didn't have such a combination of problems, I could keep working. Don't give up, Jemm.
It's just a journey, a different road.
I can specifically remember the minute my RA started! I got out of the car and all the muscles and joints in my leg felt funny.HiWe are going to check up on you on Monday
We are there for you...
Wendy
You guys are great.....thanks so much for the kindness and encouragement. I'm still stunned by how this thing can just start like this, I had no idea - it's so unfair......
I will make the appointment tomorrow - and you must check up on me (though I could always lie, of course
Thing is it will probably be two weeks before I get to see the doc - it's taking that long at the moment, my son had to wait that long just recently. Then no idea how long the wait to see a specialist IF he thinks it neccessary. Quite a while I should think.......maybe months.
I'm a bit wary of my doc, as he's never seemed too interested in dealing with my problems when I have been before - always says things like - "too many symptoms", or "book a physical" (not realising that it's taken me ages to pluck up the courage to get there in the first place).
I had a sharp pain in my left hip on and off today, and last night as I lay in bed, I felt like my shoulders, elbows, wrists and knees were 'glowing'. I felt quite hot, but not a lot of pain.
All my family know now anyway (except one son who is away), I've been crying a lot, they noticed, and bugged me into a confession.
I had a long distance chat with hubby on the phone today, and though I didn't want to tell him that way, it came out because he was asking how I was (he knew I'd been having a problem with my arm). He won't be home til thursday and it's our anniversary on Saturday. I'm just hoping I will be ok to go out to dinner.
So at least they all know now. I don't think they fully comprehend what might lie ahead though. It's that unknown that scares me the most, and even I know a doctors visit isn't going to be a crystal ball to my future.
You've all said as much - you just don't know where it will lead, where you'll be at tomorrow.
My shoulders feel as if they're glowing as I type - which is kinda nice as I'm usually very sensitive to cold, and feel it easily. Right now I'm toasty warm...lol
....and now I'm off to drown my sorrows in a bottle of Brandy and something funny on TV
I have the utmost respect and admiration for all of you - and at this point in time, I can't see me being anyone's hero - I'm a big chicken, always have been, always will be. I am, however, wise enough to know that I will likely see things differently in the morning (maybe worse...lol)
I am scared to death, but happy to inform you all that's it's done - I have an appointment to see my GP next Wednesday
Hubby is coming with me (or I might not make it..lol)
Any tips as to how to handle it? I don't want to make him feel like I'm a 'know all' and that I think he knows nothing, but at the same time; I want to make sure he takes me seriously - I'm dreading it!
Thanks all,
Jemm
Jemm, I am sorry to hear that you are having such a hard time right now. I'm glad to hear that you have an appointment set up. It's great that you are taking the time to inform yourself, that will help you in knowing the right questions to ask, and to help know why the doctor is doing certain tests, etc. The biggest advice I have for you is.....Don't get ahead of yourself. You sound very anxious and worried about the future and how you are going to deal with things....and I totally understand that. Try to stay focused in the present and take things one day at a time. It's not going to do you any good to worry about the "what if's" and what "could" be ahead in your future. You're going to have to get to a point where you just trust that each day will take care of itself and you'll have the strength and grace to handle any challenges that come your way. You talk about "giving up" as if it's a viable option. It's not. I don't know what has happened to you in your life to make "giving up" (what sounds like suicide) an option when things get too hard, but that is not an option for you. The people who love you and care about you (and especially your children) will NEVER get over you choosing to end your life. No matter what you think, or what anyone has ever told you, YOU ARE STRONG. You DO have the strength to face each day. You don't need to worry about tomorrow and what it brings. You are here today. You have people who love you. You just have to get through today. When you feel your mind trying to project into the future, bring yourself back to the "here and now". You are here. You are ok. You are not alone in this and this IS the time to reach out to others. Keep us posted on how you are doing.