Sorry, this may be a bit whiny but my goodness, I have been so exhausted for so long now. I know fatigue and ra go together and I have had bouts of extreme fatigue but this is just crazy. Its probably been over a month now and I just can not stay awake. I have brought a yoga mat and pillow to nap on in the back room at the office. I just sleep all day on the weekends. I am so tired, I can't even see straight. My arms and legs are like lead, the smallest thing is so overwhelming. I tried to put the dishes away out of the dishwasher and was crying because my dishes are just too heavy.
I know I am still in a flare, its been over 6 weeks now, can't get rid of the uvieitis and the swelling is worse than usual. My office looks awful but I just can't keep up. I really need to take some time off but there is literally no one else to work for me. I work for an optometrist and its just me and him. I hate to say this but I am almost hoping he fires me so I can collect unemployment while I try for disability but I know he is too cheap to fire me!
H i Michele. So sorry you arent feeling good but i understand as I was feeling like it a few weeks ago.The fatigue is so debilitating. Have you had your iron levels checked. I always put my fatigue down to my RA but it came as a shock to find iron levels had dropped worse than ususal and anemia had developed.
I really hope you feel better soonIts been a while since I had my iron, or any blood work done. Probably since March, it runs a wee low, usually around 10 or so. How do they treat your anemia? They started me on iron tablets but i kept forgetting to take them ( i hate swallowing pills) and my levels dropped so low that i had to have infusions. My levels are borderline again . I was tired , dizzy, sick and couldnt care about anything.I just thought it was a long flare and didnt realise anemia was so bad. I didnt have to have any transfusions though. The iron infusions did make me a little nauseated but I feel a whole lot better in myself and the fatigue isnt as bad as it was.
Oh, Michele, Sweetie, I am so sorry you are feeling so miserable! The fatigue really can be overwhelming, at times. I, also, seem to be at about that point with fatigue right now. Seems like if you sit down for a few minutes, you just fall asleep.
I agree with Pincushion about the anemia. I was on 3 iron tabs per day for about 9 months because of iron-deficiency anemia. Just stopped about 3 weeks ago and it seems like the fatigue has become worse again already.
Have you thought about Soc. Sec. Disability? I'm sure you've mentioned it before but I just can't remember.
Hang in there, Honey. My thoughts and prayers are with you,
Hugs and Blessings,
Nini
Michele,
I am so sorry that you are having such a hard time. I, too, fight with fatigue, but not as bad as you. I agree that a complete blood panel would be in order for you.
Please, let us know if we can do anything. Keep your chin up. Remember, we don't get any more than we can handle. I know that stinks right now, but I have found it to be true.
Also, are you eating healthy? I don't want to start a rant, but I know for me, I feel so much better when my diet is good.
Hang in there, we care about you.
Phats
Hmm, maybe I should ask the dr to run an iron test.Hi Michele, you poor soldier. I'm all a bit new to this but the grinding fatigue you describe and crying when something so easy becomes too hard sounds so familiar. I have no good advice for you as I'm at the start of the road but I noticed you also have tmj & it may help to know that I had this for over two years (my dentist said I must be grinding my teeth at night...I wasn't...only ever ground my teeth when I went to see him an he said that) I couldn't yawn or open my mouth properly and then suddenly it went away almost overnight- apparently a buried wisdom tooth shifted and it realigned my jaw.
thinking of you
Sam
Oh Michele honey...you're not whining and I so get where you're coming from and how you're feeling. Not only are we close in age...we seem be dealing with a lot of the same issues right now.
There is a part of me too that wishes my job would fire me so that I could collect unemployment and file for ssdi. At least I'd have some sort of temporary income and it would take the burden of making the decision off of me. Personally, I am scared to death of the whole ssdi/ssi road especially knowing that my age is going to count against me.
The fatigue really is debilitating physically and mentally. I've noticed over the last few weeks or so that I cry about everything, my concentration is next to nil, I trail off during conversations and I lose my balance out of nowhere. I don't want to leave the house much less go to work or any type of social activies. It makes me feel like a failure and like the laziest person on the face of the earth. Sometimes I really do think I'm going to snap and they are going to have to lock me up in a padded room.
My relationship with my partner definately suffers as well. Although he tries to understand, it is very hard for him sometimes and he gets angry because he feels so helpless. His family has even asked him if he thinks he'll be able to stay with me with all of my health problems. That really hurts me but I do understand why they would ask. Sometimes I think that in all fairness I should walk away so that he can find someone that doesn't hold him back from enjoying life. I know what a drag it must be to be with someone that never feels good when you are healthy, full of energy and ready to go. Then there's the sex part of the relationship that is almost non-existant. How do you even go there when even brushing your teeth makes you feel like you just ran a 20 mile marathon? So, as for your hubby....Does he understand the illnesses you're dealing with? Do you have good communication about what's going on? What about the "Spoons Story", have you shared that with him? I think the "Spoons Story" helped my partner more than anything we've ever actually discussed. My partner doesn't get tired very often but when he does....that's it, he needs a nap. I used that one time in one of our conversations. I was like "honey, you know how like 2 or 3 times a year when you get really tired and you have to take a nap?" That broke the ice because I made him laugh. Then I told him "Imagine feeling like that every single day. Can you even imagine feeling like that every day and how crazy it would make you feel day after day?" Once he had something he could actually relate to, it helped him undertand a bit more. He doesn't get so bent out of shape now when I tell him I need to rest or that I'm tired.
I seriously feel like this disease is ruining my life right now....I know you understand that. Somehow we have to find a way to feel better....there has to be something. I'm at the point that I am going to INSIST that my RD prescribe something for the fatigue as there is no doubt in my mind that I cannot possibly continue in this current state. Maybe it will help....if not, it certainly didn't hurt to try.
If there is any way I can help you...anyway at all. We can brainstorm, I can listen, we can share experiences....whatever it takes. I'm sorry I don't have any words of wisdom to make you feel better and make it all go away but I do want you to know that you are not alone. I do understand and I am here for you. Take care of yourself sweetie...we will get through this.
Peace & Love...Neasy
Phats, actually, my diet could be better, its not horrible, no fast food or anything but not much fresh stuff and I am sure too much chocolate!
Posted by Michele....He TRIES to get it but keeps thinking its going to go away and I will be back to normal.
He's hoping honey, just like everyone elses significant other....they want us to feel good again. Bless their hearts for that. If their love could cure us....we'd all be 100%.
It is really difficult for our partners to deal with these illnesses and sometimes I think we lose sight of that because we are experiencing the illnesses and dealing with so much ourselves. I'd love to hear different ways people have found to help their partners understand and cope.
Michele...have you tried Provigil or anything for the fatigue? I'm going to post and ask what else is available so it gives us an idea of what the options are.
Peace & Love...Neasy
Michele,Michelle,
I am so sorry. Last summer I felt like that. The fatigue was so overwhelming I just wanted to stay in bed and cry. I napped every noon and slept all weekend. It seemed there no hope, but thing slowly improved as medications kicked in and I'm sure there is something that will work if you can hang in there until your appt. Make sure you describe in detail your limitations and specifically how much you need to sleep. Don't use general terms. They need to get going and get this under control for you. I take pamelor before bed which has made a huge difference as it helps with nerve pain and increases REM sleep. Hang in there, I am sending you lots of hugs.
Laker
Michele,
One other thing that SERIOUSLY affects my fatigue level is my monthly cycle. When I'm PMS'ing...I could sleep the entire week away and not blink an eye. I always feel like I've been run over by a MACK truck during that week. Food for thought...
Phats
Michele - so sorry you are going through this. Are you able to pay for help for food prep. or does the govt provide any help - it has helped me. Our national arthritis society is promoting someone who is going to run the length of the country to promote arthritis - I do wish they would get a realism check - think the cheque is what they focus on. I couldnt run to the end of the street.Michele,
One other thing that SERIOUSLY affects my fatigue level is my monthly cycle. When I'm PMS'ing...I could sleep the entire week away and not blink an eye. I always feel like I've been run over by a MACK truck during that week. Food for thought...
Phats
[/QUOTE] I am with you on the fatigue issue. That has been the hardest part for me lately. I hope you are feeling better soon. Love and hugs, JI keep saying I'm new to this (which is why I messed up with the quote thing- sorry) but when I read Phat's post a lightbulb went off in my head and I've just realised the same thing happens to me- I hadn't connected the two at all- too busy feeling hideous to consider it I suppose so you've helped me understand something, thank you.
Michele, I sincerely hope you turn a corner soon.
Sam
Thanks, I take bc pills continuously to avoid hormonal migraines and well as all the other happiness that goes along with that time of the month! Oh, the joys of womanhood!Hello again Michele,
Further to the 'joys of womanhood'...though I guess this must also applie to the boys. I have read so many posts where people are struggling to explain their symptoms to partners and even worrying that their marriages won't survive and it has really brought me up short. I have no partner (don't think I can count my three year old daughter!) and sometimes I have felt so angry that there's nobody to make me a cup of tea or get the bloody lid off the peanut butter in the morning or take my daughter for a big run in the park.. and I can't ever, ever have a lie in or a nap at the weekend (unless I wanted to wake up and find the house redecorated with Crayola) BUT saying all that I cannot imagine how much harder it would be if I also had to worry about my relationship. You are so very, very far from from being a failure. i just want to thank you guys for talking about this stuff with cycles and PMS. While I do not do that stuff anymore (hysterectomy), I need to watch Danielle for all of this. The only thing we have seen so far is that her period would not go away and we had to put her on birth control to make it stop. We are hoping that it is just that she is so young and it is her body trying to regulate itself, but the more I read from you guys, I am not wondering if it is her JRA causing the prolonged period. Thanks for the heads up on this stuff.
I am so glad she does not read this board. She would kil me if she knew I was talking about her and her cycles lol.
I didnt realize there was anything you could take for fatigue. I was told that you just have to ride it out. Im going to ask my dr. about this medicine because my fatigue is horrible. I have a hard time driving home from work everyday I was just dx'd with the dreaded crohn's about 2 months ago....My RD has set me up an appt with a gastro guy....so far no meds for the tummy troubles...but, I've got meds for everything else!!!
Michele and all you guys (or dolls) with this terrible fatigue; hope you all find relief whatever you choose when you see your Drs. Seems like you could all cope better with the RA if this weren't such an issue. Such a dreadful side effect to have ... God Bless and Good Luck....
I'm amazed tht people can even work w/ this. No way!!
i'm soooo ExHAUSTED!!... I've lost my creativity, i'm dead, i sleep for hrs and hrs, and then i have the wonderful mix of bipolar.. so i've been crashing big time.
I can't find sleep meds anymore that work, i take 75 mg of atarax!!
plus valium , plus vicodin and here it its almost 6 am and im awake, ugh.. i think the valium is kicking in. its just soo exhausting, iwas out for 4 hrs, shopping, w/ my providers, they did almost all the work, but its left me for 4 days, w/ total exhaustion.. and some pain. not to mention the weight gain plus Enormous cravings... is that the pred>
or humira... its just frustrating...never seems to end...
Yes it is very hard to keep working dealing with fatigue but what can you do? The bills have to be paid and we need our health insurance. Soooo....you force yourself to go work and drag yourself around doing only what you have to do because your so afraid that if you stop and apply for ssdi they will deny you because the system makes ohhh so much sense and then where will that leave you?! I know that I look like a walking zombie at work and that my co-workers really wish that I would quit or get fired because I truly am NOT the employee that I once was. Sometimes I sleep in my car during my lunch and lately I've had horrible crying episodes out of nowhere. I was the type of person that would work two jobs, help where ever help was needed, stay late, volunteer at the animal shelter, help out the homeless and go go go. I'm not that person anymore. I'm slow, tired, can't concentrate, feel like poop every single day and unreliable. I wouldn't want me as an employee or coworker. RA has definately changed my life as I knew it and years later...I still have a hard time adapting and accepting it. Okay sorry...I'm done babbling.
As for prednisone, it's a miracle monster!! It helps us in so many ways but the cons of it just stink for lack of a better word. Plus it makes you blow up like a balloon and you DO have to be careful what you eat because I find that I'm constantly wanting to cram food in my mouth. I can't say I feel REALLY hungry...it's more like having the munchies. The other day, my partner said my face and the back of my calves looked huge. Ummm, I don't know that saying that to me was the brightest move because I'm already self conscious but then again...if he's noticing, everyone else is too.
Peace & Love...Neasy
Aw yes, the walking zombie look, isn't it in this season??? My eyes are BRIGHT red still from this nasty uvietis that I just can't seem to whip into submission. My eyes are sunken in and black, can't do make-up because they just hurt and it irritates them more.