I need Advice | Arthritis Information

For the last couple of weeks my RA has been giving me a run for my money. It has not only sucked the life out of me but mentally I am so worn down. I keep thinking "is this what my life is going to be" and it is hard to choke down. I know this is a roller coaster and things never stay the same, but this one has really hit me hard and I am struggling more mentally than I ever have. Can any of you share some tips on how to get out of this mind set that I am in. I am so down and feel pretty defeated at this moment in time. I have to change something, be tougher and be able to endure more pain I guess gracefully. I have no desire to do anything at all right now. I dont know if I just sit and wait for this horrible bout to pass, or do I try to find someway to be stronger? I feel pretty useless in my home and I guess I really am at this moment in time. This has been my worst one I have experienced in the last few years. You can see what a toll it is taking on my family and I feel almost guilty. If anyone has been in these shoes, and has found a way to endure and move on please help me. Thanks Fran

(((((((((((Franny))))))))))))

I am so sorry you are feeling this way. My first suggestion is to talk to your rd about how you are feeling. He can help you find out if you need to take a mild anti-depressant to help you cope. We have all been there and believe you me there were days I wanted to hide in bed and never come out. what meds are you on?? Are they helping at all?? If not you need to talk to your rd and tell him these meds are not working. Sometimes it takes a while before you find the right combo to work. Another thing is are you doing anything in the line of exercise? It doesn't have to be anything strenuous, even a casual walk around the block, stretching, yoga, anything along these lines can help. Another thing I find that helps is doing something for yourself no matter how simple or silly it is. Does sitting outside and feeling the sun warm you body makes you feel good, then do it, just don't get a sunburn!! lololol What about stopping and smelling the flowers? I find doing something I enjoy helps make me feel good, talking to a good friend for hours on hand is another fun thing and it always makes me happy. Does painting your fingernails make you feel good then do it. There is nothing wrong with feeling sad and blue. Just know that you are not alone here we are here to be with each other and to helps each other, but if your depresion keeps going for more then a couple weeks you need to see your dr. I hope the big hug helps and i hope you feel better soon. xoxox meme

I am going thru the same thing right now. Well, actually I am not in as much pain like you, not until tonight when my prednisone wears off. But I do feel defeated and useless. The last couple of days I have been doing rather well, but I still feel like I should be able to do more things.

I am like you and go thru bad weeks and good weeks of dealing with this mentally. I think this week is a bad week on me mentally and not so much physically. I think the warm weather has something to do with the physical part.

I have yet to figure out how to not feel "useless". Sorry, I am not much help. BUT there is good news, it is time for the rollercoaster to come full swing!!

I have certain body parts that I can take the pain. Mostly the body parts that have been affecting me since I was a child. The only one that still gets me down ever since childhood is my knees. Now, new pains are a different story I always give into those pains, because I have yet to learn to "cope".
Meme and Jooniper, thank you so much for your responses. I really appreciate them. Actually I have been on anti depressants and I quit taking them the other day. They actually made me worst I think. I have a huge flower garden and deck outside my bedroom and I smell my roses everyday alot. That is what is so sad. I was exercising, which seemed to hurt more than help. I have no cushion between my hip bones so it limits I guess what I can do in the exercise department I am finding out. I have been on all the drugs some of them twice, how would I know which works because they give you so many. I cant afford to go to an RA so I just use my primary care doctor which I think does not quite know what to do with me. I am waiting to get on Humira which I guess I am staking everything on at this point. I need energy bad. I dont go out maybe once a week I have 2 sets of stairs in my home so needless to say I hate to go down them because I have to come back up!! Obviously! My bedroom has become my haven and it is a great big bedroom that is really nice. I just mentally am shot at this time and hating this disease. I am so tense in my shoulders and neck from hurting so much and they called me a couple of things to try and relax (valium and robaxin) and even taking them I can still feel the tension in my neck and shoulders. When I am sitting I have to tell myself to relax and I do but a minute later I am tense again. I am 47 and feel like what a 150 might feel like. Like I said this will pass I know I just wish there was some way I could cope with it better. You guy's are great and do make me feel better. I can tell my family and they are compassionate but still they dont know like you do. I told my husband I was glad I had it because I dont think he could endure it. The littlest illness drives him nuts. He will tell me when he is sick, "you feel like this all the time?" And in my down times yes. Anyway again thank you for your support. I really need your inspiration!
Hi Franny... I feel like I am in the same place as you are. For one thing I am totally exhausted. I have had insomnia for days. I literally have been up all night. I do have Zoplicone to take but was advised to only take it 3-4 times a week. The other days I simply cannot sleep. I don't want to take the Zoplicone more often as I really need it the night I take the MTX injection and the night after.

Also my Meniere's Disease is really bad and I am on new meds for that. I was also recently diagnosed by my GD with PA and trying to get in to see RHeumy. I am sitting here watching my nails (toes and hands)fall off and have no clue what to do. I also have really bad pain in shoulders and knee so this is keeping me up at night.

Also I have at least 6 kidney stones (and growing more)so I am on a diruetic as well which causes me to go to the washroom at night.

So...last night I was up every time I moved because of shoulder pain(after pain med), then knee pain then up to go to washroom, then had several vertigo attacks that left me shaking and with bad pain in ear and I can't stand looking at my black, green, yellow and brown nails!!

I feel like I have been hit by a train. I have done everything I have been advised to do and try to walk everyday in spite of all problems.

I am on a merry-go-round and don't know how to get off.

I have an appointment with my GD next Monday and I am taking my husband with me. I feel good about that. He is another set of ears and is more assertive than I am. I don't know what I would do without him.

Anyway..sorry about the vent. This is supposed to be about you. I did want you to know that I am one who truly understands.

Hugs to you and god bless.

Barb

p.s. I just NOW got a call from RD. They will see me at 8:15 am on Monday. I am so happy that I am crying.
Hon just try stretching for the time being . Here is a good one sit in a chair take a towel loop it over one of your feet and gentlely stretch your foot out while pulling the toweel towards you. Use the towel to stretch your arms and your back by placing above your head, try to keep taut and bend side to side. Just simple exercises like this helps to keep what flexibility you have. Just little exercises like this helps with your flexibility, hang in there if this anti-depressant isn't helping ask if there is another you can try. I am sorry it has been hard for you and I hope you will feel better soon. meme
OK now I feel like a baby after listening to you. I get up about 4 times at least a night. It can definetly take its toll after a few nights. I dont know anything about your other diseases. Why are your finger nails discolored? I am glad you got an appointment with your RA. It sounds like you really need to see him. I have been a pest with my doctor this week because I have felt so bad. They must get so sick of hearing from me. I used Ambien to sleep, but if you dont lay down right after you take it, oh my gosh you turn into a total loon and say things so dumb. It is like it totally turns off a part of my brain. So I decided to try something else after a couple of those incidents. I actually talked to the computer. Yep I did while taking Ambien. It scared the crud out of my husband. I have heard 3 other people say they have had similar experiences while taking Ambien. Just doing crazy things. So now I take clonopin which helps and is not a narcotic. I try not to take narcotics because when I am really going to need them they will have no effect. I have the constituion of a horse I could take tons of them and they last for an hour maybe. So I am going to wait till I am older and in worst shape then I am now. I take Ultram and have for 5 years. It has been good to me and could not imagine taking it. But in bouts like this nothing seems to really help. Have you ever tried Ultram for pain? It works for me most of the time. I am not going to get on another depressant because I am so tired of taking pills. They are probably why I feel so odd mentally. Who know's. Where do you live? I live in Utah and have 2 grown children 1 son married and 1 daughter who is 19 and a stepson who is 17 and lives with us. He is so helpful as my husband is also. I dont know what I would do without there help. I wish I could help you feel better. In listening to you I feel like a bum complaining. Maybe ask your doctor about ultram to help with the pain. You never know. Hang in there and keep in touch with me ok. If I were with you I would give you a huge hug. Franny
Meme,

I dont want to take another anti depressant I think they make me feel odder than I already am. I am so tired of taking pills, I think maybe that is why mentally I feel so weird.
Sorry to laugh Franny, but talking to the computer is pretty funny! But only because I have done the same thing and was not even taking any meds...lol...I yell at my computer actually have conversations with it when it starts acting up. You know like guys do to their beloved cars...lol.

Now I remember one time I was drunk and told the wall to move outta my way...lol...hubby will not let me live that one down..lol.

As for Ultram, that did not seem to help me. It would knock me out for about 30-45 mins then I was up all night and with the pain still.

Meme and Jooniper,

I can tell you that I was not yelling at the computer, I was actually (or my husband says) talking to it. He said I thought my daughter was talking to me. I wish I could say I was just yelling at the computer, but not true. I went loco for a moment on Ambien. Ultram does not knock me out, like I said I have the constitution of a horse. I could take 10 pain pills at once and be o.k. I dont know why I am like that, but that is me. My body can tolerate alot, and I guess that is good for all the crap I am putting in it. I had to laugh when I read about someone who say's they hobble when they walk. I have always walked like I have a stick up my butt, but now I can say I walk like Ozzie Osbourne. I really favor my left side alot. Dont know why but it seems to be my weakest leg at this point in time. People are always asking me what is wrong did I hurt myself. I say ya kinda for the rest of my life. This is probably nothing compared to what is ahead I guess. I am so glad my hands do pretty good, they ache but nothing can compare to my back and hips. Again I apologize for complaining when I hear what you guy's are dealing with. But you give me hope or I should say not really hope but strength to keep going. I never thought I would be someone who would come into these forums. But I am so glad I did. You guy's are a great comfort to me and I love reading what you have to say. Every day is different and tomorrow will be better.
God bless

Barb
Dear Franny, I am so sorry that you are going through such a hard time right now. You're right...you DO need to get out of the mindset you are in. It can be very hard though, when you are depressed and in pain. I have been there (more than once). When I get depressed, it is usually only for up to 2 days. By the 3rd day, I realize I HAVE to make some kind of change, otherwise I'll stay stuck in a deep blue funk. Sometimes I make small changes, sometimes they are pretty big. I sometimes have to make myself work towards a goal, whether I feel like it or not. Perhaps renting some funny, light-hearted videos. Or reading a good book. Or re-connecting with an old friend. Or calling a church prayer line. Or, changing your diet. Or, becoming involved in some sort of group (even if it's just online). Or, reaching out to help others. That has honestly been the biggest thing to get me out of a funk. I have called my church before (during a time of depression, after finding out I have congestive heart failure at the age of 31) and asked if there were any shut-ins or elderly who needed visitors, cards in the mail, etc. I since adopted an elderly couple who began to look forward to my visits, phone calls, etc. I would spend time listening to THEM and that would take me out of MYSELF. I find the more time I make others the focus of attention, the less time I have to focus on my OWN problems. I have also learned to "fake it until you make it". When friends call, instead of going on about my health issues, etc, I try to put a smile in my voice and ask them about THEIR lives. I do have several close friends though who I can confide even the darkest stuff with. That helps tremendously. I also have dear prayer partner who is available to me at all times. She helps me get focused back on God and will show me that no matter what I'm feeling, God is still with me. Also, I'm rambling now...but music and art also help get me out of funks. I will play a cd while painting, drawing, whatever (even though I'm not artistic at all). I also take pictures and scrapbook. I try to do anything to keep my mind occupied and don't allow myself to wallow for very long. Keep us updated on how you are doing. We care about you. Love and extra gentle hugs, Juliah
Franny, I'm so sorry to hear that you're having a rough time. I wish I could help. But I can send you some hugs to hopefully make you feel better.
Cris
I am sorry Franny I did not mean to sound how ever it sounded my previous post about talking to the computer. I just forgot to mention that I was thankful I was not the only one who talks to the computer screen or better yet reply outloud what I have read. Mostly stupid emails that are crap in my email inbox. Hubby has asked me who I was talking to. For a long time when I would voice chat with my brother online, I would have the headphones in and hubby would not hear my brother, he thought I was talking to the computer. He rasied one eye-brow and was looking all crazy at me. So, now when I do talk to the computer he does not pay it any attention. He thinks Iam talking to my brother
I had to smile when you said that people are always asking if you hurt yourself. I use 2 hand splints, a neck brace and crutches or my "explorer model" walker, to be able to get out and do things. Thank goodness I don't always have to wear the neck brace. People are always assuming that I had an accident, a bad accident. Children are very curious, so I decided a long time ago that I was going to take the opportunity to show them my different equipment and tell them what is wrong with me. They accept me easily.

Bit of humor. I went to a bazarr and started into an area that I didn't realize had a step down. I took a step forward and fell face down, spread eagle on the floor. A young woman came over to me and asked if I was hurt. I told her I didn't think I was, but wasn't sure. So, she turned around and walked off and left me there still face down on the floor. I was so shocked at her actions that I didn't even get upset.
Hopefully tomorrow will be a better day.
Barb
I'm fairly new to this whole RA rollercoaster so not sure I'm much help to you. However, I did want to send you a big hug!! One of the things that helps me is coming here to this board. Just knowing that I'm in a place where others know exactly what I'm feeling somehow makes it a little better. Have you ever tried meditation? It's not for everyone but if you haven't tried it maybe it's worth a shot. I have a problem with stress and tension so it helps me relax and clear my mind. I have one of those minds that goes a million miles a second and I worry like no tomorrow so sometimes I just have to STOP, and make myself relax. I'm also a person that loves to laugh.   Sometimes that's a little hard to do with RA. A couple of weeks ago I was down in the dumps feeling a lot like you are describing so me and a couple of friends made plans to go to a comedy show. I was so down and completely exhausted. I really had to drag myself out to the show, but ya know what? I'm so glad I did, I had a great time, laughed until my face hurt which was a good hurt for a change. Try to find something you love, something that makes you smile and go for it. It's not easy sometimes, we know. Hang in there Franny and remember that we are here for you good days
Peace & Love...Neasy
Oh I never thought any of you meant anything when you were telling me of your added problems.   It humbles me, and I needed that so please dont think I thought anything negative at all. I do appreciate everyone's reply and Barb "I'm sorry some jerk walked away from you". How sad is that. You know I have never tried meditation. My mind goes a million miles an hour. I try to relax but I dont seem to be able to conquer it. I will try and then I will start thinking of a 100 different things. I do love to laugh and have fun. I think I need to get out of myself for a minute and try to focus on something else. I find when I feel crummy that is all I think about. I was crocheting and doing needle point but at this moment I just have not had interest in doing anything. I think I am going to have to force myself even when I dont want to. I can do this, maybe not with alot of grace but I can do it. You all give me hope and inspire and cheer me up and I am so glad I have you. You guy's are like a warm hug and then it is as if I can keep going.   So thanks for that and all your sweet advice. Tomorrow is a new day and will be a better one.
I am so glad you posted. Please dont stop o.k. When someone has more than this disease, yeah you do have more to endure than I. So it makes it even more important to me to hear what you have to say. If you can handle all that you do than so can I. Please keep posting o.k.
ps Wantingtoknow; We are happy you are here too and we know how hard it can be. If you ever need to vent, talk, etc. remember we are here for each other. take care and good thoughts to you.
meme38500.4629282407
Franny;

I'm on Humira and MTX and I do think I'm at a better place than I've been in years. I'll have to admit; I have more pain that I'd hoped for even at these high doses. I've finally just decided this is my lot in life. I'm never going to be totally pain free all the time. I do have better days than others. I think once I've admitted to myself that this is going to be up and down; nothing surprises me. Somehow that helps me cope.

Years ago my father gave me a book; I've considered it the best gift I've ever received. It's "The Power of Positive Thinking" by Norman Vincent Peele. If a change in outlook is what you seek; perhaps give this a try. What could it hurt?

I wish you the best of luck. I'm not big on antidepressants either...and this book gave me the tools I've needed to keep my chin up as I go through this difficult life we've been given.

Lovie

(Everyone knows I post like crazy...so I'm not trying to sell anything; just passing on something that works for me.)
Lovie you have given me much needed advice and I really appreciate it. I dont expect to be totally out of pain like you were saying, but I agree anything is better than feeling like
Anway I guess you could say that I have a health background that needed some good talking to my head!   And thats where I started. I am not in denial, I know what I am up against. And I certainly know pain. But, I also know the love of a good husband, great children and little grandchildren and good friends that give me such happiness that I feel grateful everyday.    I also know Mother natures green and the oceans blue and I am so thankful to be able to see both daily. And I thank God and concentrate on the wonderful way I live not worrying in advance what will happen to me tomorrow. But, how lucky I am to live today. And I look at my illnesses like a challenge. I am not going to let them spoil my life or get the best of me. And I keep my sense of humor as I take on that challenge and sometimes it takes just that to get through a day! And sometimes I let myself have a good cry too! After all, I am only human and that is a help as well.

I hope this note has helped. I do not pretend to have all the answers. And finding this site is a help to me too. I have never been privy to people who are in the same boat as I am. And I will put this experience on my list of "grateful" too.   Susan
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