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Newly diagnosed (last week) too tired to care
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weewaa77 posted:
Okay, maybe that isn't accurate... I care, but I'm overwhelmed and exhausted and not sure how to fight this. About me- I'm 34, married with kids and for the first time in my life- unemployed. I'm a veteran, I'm a tough chick. At least I was. I am usually the Pollyanna in my house- and I don't have it in me to cheer myself on.
RA came on like out of nowhere and hit me like a truck. I still can't believe it. I woke up one day and by the end of the week I was in the doctor's office. Two months later I'm in a rheumatologist's office- and the bloodwork and the symptoms indicate RA. I've started plaquenil and corticosteroids for pain less than a week ago. Had to quit steroids after a couple of days- I already have ulcers and barrett's esophagus and I was up all night (for several nights ina row) with GI symptoms- vomitting blood and constant urination/and diarrhea. Sorry for the overshare- I don't take NSAIDS due to my previous stomach issues. Doctor tried pain meds- but nothing gets rid of the joint pain so far. Oxycodone worked for a couple of hours, but when it wore off and I had nine or ten hours until the next dose- I was miserable. I'm supposed to follow up with the nurse at the rheumatologist's office on Monday for a duragesic patch prescription- but this seems extreme to me. Is this normal? I have already been let go from my job due to my absenteeism and general fatigue and malaise- and I have... HAD an office job. What is wrong with me? Is this RA? I'm just scared it could be more because I know people with RA who work and that aren't limping and crying over locked doors, or that don't need 14 hours of sleep or more everyday. Why am I so bad off? Is this just the begining and I'll be better later? I guess I know logically no one can answer that for me and I'll just have to wait, but patience isn't my strongsuit. Maybe it will have to become one. I'm frustrated and part of me just wants to go to bed until I feel better. Except- so far, that doesn't exist. I hate mornings and when I first wake up, I stay in bed another hour trying to negotiate with my self to get up and deal with the pain. I try to warm up my joints while still laying in bed, but It's never enough. Uggh. I'm depressing myself. Another reason why I don't want to even think about all of this. I guess this really isn't a question anyone can answer, or a question at all. I'm really asking for someone to tell me that they were as bad or worse than me and they're better now. I need some hope that persistence and time is going to make a difference and despite reading it online in RA treatment guides, I'd really like to hear it from a real person. A real person who doesn't feel emotionally obligated to say nice things. My family can tell me it's gonna be okay, but they might be biased.

As you can see- I'm full of questions and frustrated I haven't ever felt so plain old tired and unmotivated in my life. I was the work 50+ hours, make dinner from scratch, and play with the kids, and exercise twice a day girl, and now, not so much.
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Caprice_WebMD_Staff responded:
Hi Weewaa and welcome here,

I'm sure others will be responding now that the weekend is over, once they have a chance to look in.

I hope they have some ideas for you to consider talking about with your doctor.

I know how debilitating that level of pain can be and many here and on our Fibromyalgia board could relate. (((softhugs)))
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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lglavish responded:
Hi Weewaa77,

I know exactly how you feel. I was diagnosed with RA in April of 2010. It hit hard and fast. I never knew there could be pain like I had with this disease, you are not alone, and it will get better. It sounds like you will have an extra hard time if you can't take corticosteroids. They can give you an intramuscular shot of depo medrol (a steroid) that might be the way to go in the short term if your stomach can't take the oral. It is hard in the beginning because it takes time to get the meds sorted out and working.

The best advice I can give you is to become educated and knowledgeable about RA. By doing this you will help yourself in making informed decisions.

I decided early on to treat my disease aggressively and seek remission if possible. On the day I was diagnosed I started methotrexate and 2 and a half months later I was getting little response and lots of pain; I started a biologic (Humira) after that and life started inching towards normal. Now, a year and a half later I would have to say my life is happy again. In my darkest days I did not think there was much to look forward to but I have walked in your shoes and it will get better.

I have not made it to remission but my RA is well controlled and I have not had the pain that you are dealing with in a long time. There are many people online to give you support. Another good site is www.rawarrior.com , I found many useful links on that site. I hope you get some relief soon.
 
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weewaa77 responded:
Thank you for your replies. I guess I was just having a darker day. I was feeling kinda beyond Eeyore about it all. After I wrote this, I went to my bedroom to get a charger for my phone and I woke up 16 hours later. Guess I was overtired and over-hurting. I can take tired and hurting, but once I get to what my family calls 'over-hurting' just put me in the cupboard for the night, I'm no good to anyone and probably going to bite your head off. Gotta learn to deal with my frustration as a symptom and treat it before it boils over on my loved ones. I really appreciate the replies. The 'hit hard and fast' is a good analysis.

I'm sad that I'm so disabled currently that I'm not working- but at least I can afford it financially and it gives me time to focus on getting my current normal back towards where I can tolerate it. The biggest challenge is my attitude right now, and not trying to take on more than I can before I can. I'll make it. I just have to trust in what I feel and not berate myself for not being able to do what I think I should be able to do. Easier said than done, but like a New Year's resolution --it wont' take unless I'm holding me accountable- this is my new diagnosis resolution. I'll make changes to my diet and workout schedule slowly and with great focus. I'll study my disease and learn my enemy. I'm going to be honest about my limitations and my strengths. Giving in isn't an option. Thank you again.
 
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me_n_my_4 responded:
Hi Weewaa ,

Sorry to hear you are having so much trouble out of your RA. Well you asked for it so here it goes. I am married and a mom of four little ones and I work fulltime. I have had asthma all my life and after while pregnant with my last one I was diagnosed with hyperthyroidism. In March I was just diagnosed with RA and April I was diagnosed with Fibromyalgia. I see that you have only been diagnosed a week but most people with RA had symptoms long before they were diagnosed. I think a lot of times as women we brush off our pain and keep moving for the sake of our kids and family. I know things can be frustrating dealing with the RA but it seems like you have a good doctor that is doing the necessary things that should be done. Since you have had previous issues NSAIDs and the Oxycodone is not helping then the next thing would be a patch that could help alleviate you joint pain. I am on plaquenil as well as sulfazine (sorry about the spelling) and that seem to be the right combo for me.

I can tell you that once you get on the right combo of meds things will get better (and trust me I'm just getting to that point) so it does take time some quicker than others for me I have a fatty liver so we are always watching my liver enzymes to make sure the medication is not effecting my liver. However I can't tell you that I wake up in the mornings feeling 100% or that I have pain free days but I can tell you that the pain is a lot more manageable on the right combination of med, supplement and etc. If your Rheumy hasn't already have them to check your vitamin D levels because a lot of times RA patients seem to be vitamin D deficient which contributes to more pain.

It's good to know that you have a supportive family there are a lot of people here that don't have that same support. The main thing to remember is that you have to set limits for yourself because if you overdo it you will cause yourself more pain in the long run. We are only human though so there will be times that we overdo it but it shouldn't be on a regular basis. It's good that you are already active stay that way because it is an important part and managing your RA. I still play with my kids and have family activities that are rough on my joints but when I know I am going to have a lot of activity I usually do nothing but rest the day before and the day after. When I am out with my family and very busy they always tell me that I am going to be hurting later and I always tell them that I am ok until I stop moving.
This really helps me because it lets me focus on being with my family and I worry about the pain later and even sometimes after I have done everything and I expect to be in a lot of pain the pain doesn't be as bad as I had expected it.

Now don't get me wrong I have flares every so often some short and some long but I deal with the flares and focus on spending time with my family when I am not having flares it's mainly about balance and setting limits for yourself. I hope this brings you some comfort because things will get better but you just have to be patient and stay positive and listen to your doctor.

I wish you the best please keep in touch to let me know how you are doing
 
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weewaa77 replied to me_n_my_4's response:
Wow... this really explains a lot and captures how I feel. My family says the same thing. My hubby keeps telling me it's okay to slow all of us down. I'm trying to believe it, but I'm being stubborn. I think I can deal with RA changing my life, but it's just so messed up to change my family's standard of living. For example- I went to the movies with my husband and my daughter- which of course the sitting still caused me to be sore. Then we made a quick run to the mall across the street. By the time I checked out with my purchase- I was sweating bullets and getting shaky. Truly, if I had walked home I'd have been better off. The drive home was enough time for everything to 'lock up' and really start swelling. But I did something. I haven't found my balance yet, so it's one extreme or another.

Thank you for your support. It's funny that you mention women thinking of our illness last- I once had a doctor tell me that ' men go to the ER when they are pratically healed because they've waited so long, and women go in before the symptoms have started'. Needless to say, he was just a jerk. Part of my problems is that I worry about being a hypochondriac or being weak- mostly because I look way too normal. From what I've read that's typical.

Thanks for caring. I have to say, I can't imagine dealing with this and 4 little ones and working. You're a rock star, for sure. Best of luck to you, too.
 
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lisapkemmerlin replied to weewaa77's response:
I am newly diagnosed and have not seen a rheumy yet but I wanted to ask about something I saw in the last post. wee waa you said you were sweating bullets and shaky in the store. This happens to me every time I have to shop, I though I was starting to have panic attacks but is this possibly related to the RA?
 
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olathegal replied to lisapkemmerlin's response:
I appreciate Weewaa77 mentioning sweating bullets and shaky also. I am also having these symptoms and didn't know why. I was in a grocery store getting ready to pay and my hands started shaking so bad I couldn't write a check. It was so embarrassing. So this is related to RA? I thought I was developing parkinson's.
 
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weewaa77 replied to olathegal's response:
lisapkemmerlin &olathegal--
I honestly don't know if the sweating and shaking is related to Rheumatoid arthritis or not. I guess I want to believe so because I don't want to borrow trouble. Here is why I think it is- The research I've done on RA indicates that symptoms are reduced when women are pregnant- but about 2 years ago (long before my diagnosis) I started having night sweats and hot flashes and began missing periods, I figured I was too young for menopause (32 at the time) but I couldn't take it anymore. I saw my gyn and she did some blood tests. If I remember correctly- there are two horomones that control ovulation & start your menstrual cycle- and they should be about a 1:1 ratio. Mine was way off. I now have come to wonder if my horomone levels being off is related to RA- or vice versa. It seems to me that if having horomone levels higher during pregnancy can alleviate RA symptoms, that during pre-menopause/menopause lower horomone levels would worsen them. I know that for me- whenever I get the shakes/sweats very badly- the best solution is fluids- and rest normally with an icepack on my chest to cool me off, lol.

I think it is more likely that we aren't recognizing early signs of how taxing life is with RA. Think about it- you are pushing the cart- probably gripping the handle too tightly, walking, bending over, reaching up, etc. I will tell you this, it's not just the store- I often get the shaking hands from typing (this message has got me trembling already), or making dinner. Maybe the more we tax our hands the more we shake, I dunno. Perhaps it is an early warning signal that we've irritated that carpal tunnel nerve?

I just taught myself to knit- to keep my fingers active- it's like a hand workout. I figured if keeping my joints moving is good for the RA (balanced with rest of course) that this was the best exercise I could give my hands. I can get on the treadmill for my lower body, and use my home gym to stretch my upper body, but what do you do for your hands? Since those were the worst for me- I knew I needed something. So, I came up with knitting. I about drove myself crazy trying to learn. The best part is, I can stop whenever I need to and then go back to it. It actually seems to be working as I get less numbness and my hands aren't as stiff as quickly during the day- in the mornign is another story. The swelling hasn't changed at all. But, stiffness wise, I am less likely to feel "locked up" in my hands and need to ice my hands if I knit for a couple of rows every few hours. Besides- I am out of work and at least I have something to show for the time I have to sit in the chair and rest besides just watching too much crappy television programs and crying because I can't open a bottle of juice. If anyone addresses the shakes/sweating with their doc- can you let me know what they say? I see my doctor again in November- so I'll ask then and post back here at that time but if you find out I'd love to hear.

I'm blaming everything on RA! One enemy to fight, I can't even begin to contemplate having another condition taking control of my body/life. RA is the evil dragon, and my life is the princess in the tower, and one way or another, I'm getting her out of there!


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