i had a total melt down today and just finished up a good hours worth of sobbing and this is one of the first very active RA forums i've found and not sure where to go but not sure if i belong here. trying to keep post as emotionaldramarama free as i can but i am just ready to start crying again and don't know what to do. not even sure how to condense it properly... so sorry..
when i was 16 a doctor first told me that he thought i had juvenile ra. i didn't like the sound of that because several of my family members have it and it didn't look like fun, i was 16, and what more is there to say? i was 16 so i ignored him, never would discuss it again with him.
when i was in my early 20s another doctor said he thought i had RA. i still didn't like hearing it and never saw him again.
now i'm 29. through out my life i have been a very physically active person. i enjoy sports; previously rock climbing, always love snowboarding, hiking, i use to run, particularly trail running, i enjoy hiking, inline skating, racquet ball, white water rafting.. if it involves being physically active and breaking a sweat i loved it. through the last few years i had to taper off with it because i hurt too much with it and was getting some serious joint injuries again. and again, my sports med doctor said he thought i had something wrong with my joints, arthritis of some form, something, and suggested i see a rheumatologist.. with all the sports i had torn the meniscus in both knees, tore rotor cuff, gotten several stress fractures in my feet, and so on.
last year i got injured at work, thrown against a metal bath tub by a dog, worked at a vet clinic. the physical therapist said she thought i injured my SI joint in my back/hip. after working with me she said she thought i should see someone about my joint pain. my doctor i saw w/ the injury thought i was milking my L&I claim and trying to avoid work. then he decided i was depressed. i AM depressed by the way.
i decided to stick it out with doctor because even though personally we don't get along i feel like he is actually a good doctor and does do due diligence. he ran some blood tests to check for some things. said my sed rate was slightly high. i tested negative for rheumatoid arthritis, my thyroid was fine.. blahblahblah. then strongly suggested antidepressants. always prescribed tylenol3 and diclofenac some other stuff and some vitamin supplements because i am defficient in some vitamins and minerals, i guess. the last time i saw him he said he was concerned, and thought i should really see a rheumatologist. this is after telling me for months that i'm simply depressed and should see a counselor and go on antidepressants. again, i do feel that he is trying to do due diligence, he ran the blood work, he sees me, he prescribed things to try and help manage pain. but given the life events in the last year of my life i don't think it makes him incompetent to think i am depressed and guess it's horses and not zebras when he hears hoof beats.
i'll see a rheumatologist december 18th.
so i don't know if i should even post here since i've heard since i was 16 that my doctors think i have ra but have avoided following up with them. and NOW my doctor says he thinks i'm simply depressed. i won't know anything more for another month and a half.
but i just laid down sobbing today because i hurt. and i can handle hurting. i've gotten sports injuries, i've gotten injured before.. and i've had joint pain on and off for more than a decade. but i was cleaning my ferrets cage and i couldn't close the clips that held things in their cage in place. i feel absolutely useless and worthless. i'm stressed and in the past i would go for a run but it would hurt far too much at this point. most of my stress relieving activities are things that just simply HURT now. all the meds i'm on leave me groggy. no one in my life seems to grasp that aside from hurting i simply am -incapable- not -unwilling- to do things. and i just want to lie down and never move again. i feel so useless.
i don't know how people manage. all my life i have sucked it up when something hurt, put on a smile and just dealt with it. no point in complaining about an ache i know isn't going to go away so even people i have known since middleschool don't have a clue that i -always- hurt to one level or another. and they can't grasp that the person who does everything simply cant anymore and i feel absolutely unloved and uncared about by them when they act like i should get over it. but the thing is. i -cant- do some things these days. if i just hurt i could cope. but i don't have the strength in my fingers to do certain tasks and i feel terrified, useless, and out of control. i really just started sobbing and losing it when i thought about how stressed i felt and thought about going to the rock climbing gym and realised it had been years and that there was absolutely no way i could even safely do it right now.
i'm angry with myself. with my doctor for being dismissive, for my friends and family for not understand, livid with my boyfriend because i'm always the goto one in our relationship and i simply -can't- right now.. and all that hurt and rage is.. well it has to do with them. but it mainly has to do with me. being scared and feeling out of control.
i'm sorry this is so very long and negative, but how do people cope. i'm even more afraid now that the rheumatologist will just tell me i am depressed and to take some prozac or something. how do people cope? how do you cope with something that takes away your ability to live and do what you are accustomed to doing? and people around you being dismissive while it happens?
any any any input at all would be appreciated.. and i'll go for a walk and calm down before i log into the forums again so even if it's just to say it sounds like i'm being a hypochondriac and should settle down.. it would be appreciated.. because maybe it really just is all in my head.. and it'd probably be easier to take from third parties who aren't involved in my life than my nearest and dearest.. but i am at my wit's ends and just crying and feel useless and powerless right now. so any sense of perspective or direction or other people's experiences would be greatly appreciated.
***
edited to ad meds and supplements i am taking now since people have been suggesting things...
diclofenac twice a day w/ famotadine because i get stomach ulcers when i take nsaids in high doses over long periods of time
tylenol 3, makes me vomit half the time so i'm not a fan of it.
remeron at night to sleep and for weight gain, doesn't do anything for the depression, in fact i seem to feel worse emotionally while on it.
xanax for anxiety a few times a month
i'm taking vitamin d,calcium, multivitamin, iron, fish oil, glucosamine, chondroitin and sometimes sodium because i tend to have pretty low BP and get dizzy and faint sometimes so more salt seems to help. physicians have suggested the supplements i am taking and current physician approved the lot. it makes for a silly handful of pills to eat though.
joyfulgirl2008-11-07 23:12:51Oh honey. I'm so sorry for what's happening. I know what it's like to feel hopeless, useless and so many other emotions you're feeling. It helps to vent about it to people who understand. It's obvious you have something more going on than depression. I think it would be a pretty good guess that your Dr.'s have been right and you have RA or something like it. Alot of people with RA have negative blood work, I think it's something like 35%. Just try to hang in there. There are so many good, caring people here who would like nothing better than to listen when you need to talk. I hope you find some answers when you see your rheumatologist. I would like to welcome you to the board, but it's a bittersweet welcome.Hi & welcome. I definately feel this is the right place for you. Lots of similar stories, understanding and supportive members who can encourage, offer good information, tips and just be there for you. I'm glad you are going to see the rheumatologist, but I know it is hard to wait for the appointment! try to pamper yourself some this weekend, take some hot baths and get some rest. I hope you are feeling better soon and feel free to post/share/read any time.
TaraP.S. meant to tell you that I also started with a work related injury, although I had problems in the past, my injury really set it off. I was in therapy for 3 months with no relief and increasng pain before a wonderful doctor sent me to a rheumatologist!Hi Joyful....I only have a sec here, didn't even read your entire post. I will later though. I just wanted to say welcome, and yes. I do think this is an appropriate forum for you. I'm glad you found us. :) See you later
Linda
Shame on you and this forum!
AchingAudrey2008-11-30 11:31:18Joy - this forum is a place for us to vent and look for support. We have all made that same first post, just like you did. We are all pulling for you. Good luck and never stop. Take care ~~ Cathy
thank you for the responses everyone... :/ i stepped outside. took a breather.. finished cleaning the ferret cage.. ate something... how does the saying go, HALT- hungry, angry, lonely, tired... not an alcoholic but a good self assessment when anyone feels out of sorts.
i appreciate the kind words and advice.
miles2go- thank you, i hope the rheumatologist will have something helpful:/ feel like an idiot for not pursuing this sooner, with more willing docs, while i was insured<G>
tara- i'm a shower/bath freak already ;) i wake up, take meds in bed, wait til i hear coffee maker start, get cup of coffee and roll to the shower and sit in the shower for half an hour and drink my first soggy cup o' the morning and the night finishes up with a hot soak. sorry to hear about your own work related injury though.. no fun.. i am very glad you had a caring and compassionate doctor though.
linncn- thanks for the welcome in your busy day, appreciated
audrey- so sorry you got the misdiagnosis runaround:/ antidepressants haven't helped me with depression and have led to some other problems for me... i'm open to it but i've had problems like seizures, to suicidal impulses on them so i'd probably see a shrink rather than my script happy physician prescribing and monitoring. :/
justsaynoemore- thank you for the kind welcome. i did a doubletake at the last item in your tag line. i think i might need a manicure.
joyfulgirl, Welcome here! If you do have Ra it does not mean it is the end , with the
right medications you can be pain free or with little pain. Work with your Rd.
When I first had Ra I also thought my life would never be good again but with
medications now, you can get it under control.
This is a great place for you to learn and to ask any questions that come to mind.
Good luck to you. Maimi
HI Joy, now you hopefully feel a little better as you are in the right place and hopefully we can all show you ways to cope and have some laughs along the way also. I was like you, totally into physical stuff, I was an athlete, mainly distance running, swimming and biking, all of them I no longer can do and yes that did hurt and still does sometimes, but you do find other things to keep you busy and somewhere down the track you may be even thankful for RA as you meet many nice people and take different paths in your life than what you expected so don't ever give up, yes, cry, get angry, laugh, any emotion is warranted but always tell yourself tomorrows another day and in the RA world today and tomorrow can be vastly different, best of luck and keep posting, regards Janie.
LOL - no, I contracted toenail fungus after being on MTX and living in SW Florida :) About two more months of varnish and it should be gone - took almost a year. Glad you poured it all out and we all are grownups here with broad shoulders, tips on coping, and a place to come to for support and advice. Welcome.
Shame on you and this forum!
AchingAudrey2008-11-30 11:30:56My depression disappeared once I got properly diagnosed and received the correct combination of drugs right for my form of RA. Joyful,
You sound athletic, but something like running to destress might not be a good idea until your symptons subside. Do you like to swim? Some physical therapy places have warm water pools, that are soothing to ones achy body, and enable one to do stretches, exercise and even cardio exercises. You might check with your local Arthritis Foundation chapter for a warm water pool in your area.
Look into taking omega 3s, fish oil, many with RA take them, it helps reduce inflammation, but perhaps double check w/your doc or pharmacist, to make sure it doesn't interact with any other meds you are on.
Gotta go for now, hang in there, lattah. Joie
I think you've just written my story.... Yes, was dismissed and told my joint pain was depression, the whole lot.
How do I deal? I take each day as it comes -- there are bad ones, not so bad ones and even some good ones. I also look at those who are way worse than me and thank my lucky stars that I can still do some things. The world doesn't end with RA - though somedays you may wish it did. Joyful, welcome to the board. You stated it so well and you made me cry. I feel so bad for you. Life will not always be like this once you get to a rheumatologist, get a diagnosis and a plan of care. When you see him, please tell him what you have told us. You stated it in such a way that I believe he/she will understand where you are coming from. Make a list of questions for the rheumy to answer to that you will go home equiped with the ability to cope with whatever is going on. Ask him for some medication, antiinflammatories to help your pain and maybe even something stronger if that does not work. Insist on xrays of your hands and feet to see if you have damage to your joints. Don't leave his office without something to make you feel better short term until your test results start coming in and the plan is started. It sounds like you have some sort of arthritis going on and you at least have made the commitment to start dealing with this disease head on. That is a good start. Good luck and keep us posted. A big hug for you. Lorimaimi- thanks for the positive words, reminds me to not be so pessimistic and all:/
janiefx- i'm so frustrated because i want to just go outside and burn off energy and stress:/ i know there are plenty of other fun things but i want to just go out and sweat if that makes any sense ya know?:< will stop being such a little whiner though and find other things...
justsaynoemore- ahhhh ok now it makes sense, i'm -still- wanting to do my nails now though!
audey- yeah, right now the psych i saw who talked to my therapist just thinks it's a nogo for me -shrug- and therapist says anyone who hurt all the time and their doctor was being a dismissive dork wouldn't feel so hot so he wants me to see rheumatologist. lalalimbo land eh?
joie- thanks for the welcome joie, i keep meaning to start swimming.. just dont enjoy it as much as a lot of other things. but the options there so i should probably take it rather than kvetch endlessly eh? i'll go tomorrow and get out some energy and tension :>
islandwoman- thank ya for the welcome. i am trying to be calmer and all now.. everyone's kind words and encouragement help. i really appreciate it.
lorster- i'm so sorry:/ i didn't mean to upset anyone else. :/ thank you. i wonder if it would make more sense if i printed this and took it in. it just seems so emotional and whiney and over the top:/i'm kind of embarassed already that i posted it:/ i'm just so tired of hurting and feeling useless and unable to do things i did not so very long ago:/
on a far lighter note. i went and sewed a skirt. an obnoxious, bright, skirt. sometimes ya just gotta do something silly i guess. so that's what i did.
now i'll go finish taking care of stuff i should have taken care of already today...:/
keep up your spirits with activities you do enjoy such as sewing. you will be on the road to feeling better very soon. hugggs.ok.. i hope this is ok and someone slap me on the wrist if it isn't.. but this is what i sewed. wasn't for sure on whether posting images was acceptable here. couldn't find anything against it. so..
Welcome Joyful...you will find all the advice and support you need from members here. I am so sorry to read of all you have been going through. And it must be more devastating to someone young who obviously has spent much of their their life playing sport and keeping fit.
The forthcoming visit to the Rheumatologist is hopefully going to help you HEAPS!!
I was Dx'ed only a few months ago when my RA hit me like a ton of bricks, practically overnight. I couldn't walk, comb my hair, drive or even get to the bathroom alone A week later and I was getting about like I always had thanks to a small dosage of Prednisone each day. OK, it has a nasty reputation but it sure saw me over a terrible time and I am nearly finished my taper off it. Plus I have had 5 months of 3 other meds that have been helping also.
I think its a great idea to print off what you wrote here in your original post and take it to your Rheumy. It was written when you felt really low and tells it exactly like it is!
I cant go back and check as I'll lose this post but are you on an anti inflammatory drug right now? They may help in the interim.
You come back anytime you want to talk and there will be ears here for you.
Take care
Lyn
Awww, so kewl. I love material like that. That is material I would collect. I love to make purses when I'm down. Keep up the good work. JFG,
Cute twirly skirt! Sewing is a creative outlet, especially when one makes fun stuff to wear. Thanks for sharing, photos are okay, but remember, when something goes out onto the internet, its out there forever, somewhere.
thanks lorster and joie.. i'm on a forum for sewing and crafting and decided i didn't want to hide identity always... i appreciate the reminder ... i just don't want to live my life centered around mean people. so i'm pretty open with images and contact info.. i dub thee forum mom though:D
i'm still in a bugger of a mood and my boyfriend's avoiding me after my meltdown earlier:/ can't say as i blame him. i feel like maybe i can cope with it now after a day of just melting down about it though.
Just a suggestion. See if your boyfriend will go to your doctor appointment so that he will better understand what is going on and may be able to start understanding what you are going through. Sometimes they need to hear it from the health care professional before they can grasp what is truly going on. i thought about it.. maybe not for initial appointment but follow up yeah.. but it's also on me to behave better:<
if i just always say, i'm fine, i'm fine hooah. well. then when i blow up because i'm not fine it doesn't make much sense... and he's not the enemy so it's not kind to blow up on him anyway:< there's a difference between overwrought and emotional and attacking your loved ones and i've certainly been crossing it and been a miserable person to be around lately... i figure i need to adjust my own behavior so he can be receptive to hearing anything calmly from me first:/ so i'll probably just try and let him see that he's not cohabitating with a wolverine for the next few days before i bring anything up directly.. it's so easy to forget you're not the only one that has to deal with something but so does everyone around you and they only really get secondhand knowledge from ya.. i am so guilty of forgetting that regularly:<
i think i will print that post and take it to rheumatologist.. and i think i will take my mancreature in for the follow up appointment so he can get a better understanding too.. i dunno what he'll say is going on with me but whatever it is i hurt and would like to know how to cope with it better...:/ and it'll involve having mancreature on board for it
I'm getting in here late- but wanted to say welcome!
The only advice I have that you haven't already been given is advice I don't follow myself. So I'm a great one to have it coming from...
Don't pretend to be fine when you are not. If you carry in heavy grocery bags even though it is hurting your wrists and then you put away the groceries after you worked all day first- even though you are tired and achey people will let you do it. Not only will they let you but they will expect it. Admit to yourself that you need help and demand help.
For me- it's too late.
hi Joy and welcome to the site. So sorry you feel so rotten but things will get better. Go to that dr and get a treatment plan going. He/she will give you reading material that you can share with your manfriend. Then maybe he will understand more and so will you. There's lots of valuable info out there. It doesn't necessarily mean you will end up in a bad way. There are so many meds to take and I firmly believe in a omega 3 diet. Fish, chicken, and lots of green veggies.
I love the skirt btw. Did you sew often? Do you make your own clothes? I think it was awesome. I hope things turn around for you and take care.
[QUOTE=CinDee]hi Joy and welcome to the site. So sorry you feel so rotten but things will get better. Go to that dr and get a treatment plan going. He/she will give you reading material that you can share with your manfriend. Then maybe he will understand more and so will you. There's lots of valuable info out there. It doesn't necessarily mean you will end up in a bad way. There are so many meds to take and I firmly believe in a omega 3 diet. Fish, chicken, and lots of green veggies.
Please don't do anything based on what you read here - whether it's biologics, traditional DMARDs, antibiotic protocol, high dose omega-3's (my fave) or even the Chocolate Cake diet... use it as a springboard for your own research.
another thing joy, ask your doctor to check your vitamin D level and I'm not sure if you said you had your thyroid tested but the thyroid can do funny things to the body. You must advocate for yourself and I think everyone on here will agree that you must be proactive with this disease, you must always be thinking about how best to treat it and try to balance treatment with quality of life. Also, this is a small wake up call for you to get busy and take the best care of your body that you can. That means change in diet, supplements, exercise, sleep, relaxation, reducing stress levels...everything a bit healthier. Hey Joy, I love the skirt. It's adorable. I sew too. Right now I'm making aprons. Halter type, reversible, and I'm so pleased with how they're turning out. I'm making for my sons girlfriends and wives for Christmas. When I create something it makes me feel better all around.
Welcome Joyful!! More seamstresses!! woo hoo! I sew as well. I make children's "boutique" clothing. Most are one of a kind designs and I also love to refashion clothing!
Anyway...one thing I haven't seen mentioned yet is DO NOT GIVE UP! A lot of Docs will tell you "it's all in your head". If you are in pain, it's NOT in your head. DON'T give in to that crap.
Also, depression is VERY common with RA. Make sure you tell the RD that your Dr thought you may have Jr RA as well. Those all are things that will help them look for very specific things in your blood tests as well as x-rays.
Also, be sure to mention the bad reactions to the anti-depressives, so they can change it.
ADDED: Take your first post for them to read. There is alot of GREAT info in that to help them know where to turn.And lastly:
Come here and share all the trials and triumph's of all the great members here. We have all been there, or ARE there now. Helping each other cope is what it's all about here. :)
GrammaKathy2008-11-10 18:22:31Joyful-welcome to the roller coaster. Hopefully you will get a diagnosis of some sort real soon and that will give you some piece of mind. A lot of folks have given some really good advice here. All I can tell you is that if life looks grim now it can turn at any moment. I am also a very active person and not being capable of all my old activities depressed me a great deal. Now 16 years later I am nearly as active as I was before I got RA. You'll probably have to learn to alter some of the things you do (and maybe eliminate some activities) but I am hopeful you can pull through.
I was depressed on and off through those years which is normal. You will figure it out and when you do you will be a wiser person.
Good luck and I hope you get that diagnosis real soon.
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