You may be on to something there. Sounds like the commute is a big part of the problem. Perhaps, switching gears and working from home could allow you to set your own schedule.

My husband owns his own tax accounting business and works from our home - has for 20 years. I handle all of his processing and secretarial work - on a schedule that works for me. Stopping to take breaks and naps is a great part of this setup. I really don't think that I could handle a long commute and then a full day's work at this point in my life. I am very fortunate to have a situation like this.

Perhaps, this is something you could work towards if you feel that you can successfully replace your income from your present job. It does come with some negatives, but for us it works well.

Hey Greg, I was diagnosed august of last year although I had been hurting since last june. I had took sick leave at work and was off for nearly 10 months. My finances forced me back before I was ready but I seem to be doing ok since I have been back a little over a month now. My situation is simular to yours as far as filing for permanent disability. I probably wouldn't have too much trouble getting it from my workplace since it is also different than ssdi.

I just plan to take it day by day and work just as long as I can. I'm only 40 right now but if I could hang in there and get another 6 years or so then it would help my retirement benefits. I'm sure my body will tell me when its time to give it up. It's hard to plan the future or really anything else with ra. I do know that when filing for this stuff your looking at 6 months at its best to get approved and start drawing.

I say play it by ear, prepare ahead, and research your options. Working from home does sound nice. You can be late if you want,, take naps as needed, and be your own boss and take a day off whenever you please. Good luck getting it figured out :)

Thanks guys! Working from home is definitely in my future but I was hoping to do it when my mind wanted to, not when my body is forcing me to. I have an 8 week vacation coming up so I can see how much I can recover. That may be enough rest to calm things down and buy me some more time. Working another year will add to my disability check but won't change my retirement much. I'll get 60% in 8 years (at 60) no matter when I start disability.

There is a test called the Vectra D. It can help identify if an anti-TNF (Enbrel) is right for you or if another option would be better. have you ever had a steroid shot for allergies or something else? I'm wondering how a general steroid shot would work versus the terrible time you have with daily prednisone.

Anyway, your doctor is definitely the best place to find out what can help. Best wishes!

Been through all that Greg - really is frustrating isn't it?

As you have found rest is the key. And not just your normal 8 hours of good sleep at night.

My work schedule was a bit different - I worked 7 days on - 2 off - 4 on - 1 off, then start over again. So I never got to rest up on the weekends and recharge like you say. It just slowly wore me out going on and on like that until I just couldn't do it anymore.

Fast forward to now - it's been 2.5 years since I stopped working. I still have to really pace myself. Now that the weather has broken after such a brutal winter I have all these spring projects I want to do that I thought about over the winter. The first week it was nice out I refused to go in the house except for meals. Well I did it to myself overdoing it and my body just shut down after the 3rd day. Now I have to make a very conscience effort to pace myself. The last 2 days it would be ~2-3 hours working on something (ever so slowly of course) and that is my limit - its on the porch or deck for the rest of the day.

I guess it's easier now that I am home all the time but not any less frustrating. At least now when I feel my body wanting to shut down I can get into the recliner and take those mandatory naps when needed. When I was working that was the really scary part - trying to force myself to stay alert when my body was screaming at me to lay down and sleep.

Being you are close to your summer off I think it's a good idea to use that time to rest up and see how you do. But be prepared (which it sounds like you are) for the same cycle to start again when you go back to work. Maybe as you say you and your Rheumatologist can get a combo of meds working better for you. In my case that has never happened so I just live with what I have - it is what it is.

Bcatz, I had the Vectra DA taken. It put me in the lower severe range for disease activity but to my knowledge it wasn't used when putting me on Enbrel. I'll look into that. I even have the results here at home. I can tolerate the shots and have a couple scheduled. Of course I was in such pain yesterday they would have had to shoot up just about every joint in my body! Lol

Coaltrain, vacation is approaching so I hope things calm down then. I'm struggling like crazy to even get that far. About 7 weeks to go. I may be doing 4 day weeks until then seeing my bosses aren't complaining. It seems I need about 8-10 hours of good sleep a night for a few days before my RA lets up. It seems like working from home is the solution but part of me wants to try more meds to give myself every opportunity to work another year.

Let me ask you guys something.. Does RA typically get better over time or worse the longer we have the disease? People, who do not have RA, tell me that it will get better over time. That's easy for them to say.

As far as getting better over time - well....somewhat for me. Everyone seems to have to do a lot of experimentation with different combinations of meds to find what works for them and with different ranges of success.

For me after 3-4 years(?) I can honestly say that yes - I am better than I was with the Humira compared to being on Methotrexate alone. The Humira has taken away most of those immobilizing "take me to the ER" type joint flares - I was getting them almost constantly 3-4 times a week. Each of those "super" flares would last 3 days and it seemed just as one was subsiding on the third day another would start. I now get those super flares only once ever 4-6 weeks so that to me is a big improvement.

But the fatigue and brain fog are still present albeit better than before. I can at least stay awake when I read about 1/2 the time.

So can it get better? Yes. But for me it seems to have brought me back up to a level that I feel 50%-60% of my old self. I've conceded to it now to realize that this is likely as good as I am going to get. A lot of all this has to do with attitude also - I remember in the beginning having all the questions that you've been asking lately. For me after a couple years I've grown accustomed to how the RA affects me and have gotten much better at dealing with it emotionally. A lot of great members here have helped me so much - one key point was to start concentrating on what you CAN do and what you CAN'T. That was a tough one being I was generally mad at the world for the longest time.

And wanted to add something that you mentioned earlier - consider yourself very lucky to be in the system where you are fairly confident on being able to be awarded disability. I wasn't so lucky and that subject was all that consumed my life the last 6 months I was working. What was I going to do? How and I going to pay the mortgage and bills? I've been the sole income earner in our household for 10 years prior. This fact is what made me keep working way beyond when I should have stopped. The day I walked away I felt like I was taking a nightmarish trip into the unknown.

Has your Dr talked to you about switching medications, instead of Enbrel? I have been on Enbrel, Humira, Orencia, Cimzia, Actemra, and now Retuxin. The Retuxin seems to be the one that has worked the best.

I'm going to once again put my neck on the chopping block so some regulars can chop it off again but maybe this will help you. What I suggest does nothing to slow the disease but may help (does me) with keeping the pain and inflammation tolerable. Stop consuming all processed sugar (sodas), stop red and green peppers (paprika in virtually everything lable like mayo and mustard and veg broth "spices or natural flavoring or natural preservatives"), stop tomatoes, stop white potatoes, stop cashews, stop almonds, stop processed/preserved foods as much as possible (molecular design of synthetic preservatives I think similar to red pepper but if salt is the only preservative that's fine for RA), stop eggplant, stop egg whites, stop as much dairy as you can and as much saturated fat as you can. No peaches or mango or egg plant.

Do this for five solid days, take good multi vitamins to get the needed minerals etc, drink LOTS of water (unsweet tea/coffee fine), eat walnuts and pineapple (out of the can is fine) as much as you can stand (good natural anti-inflamms), for bulk consume reduced fat ritz crackers with extra crunchy peanut butter (yeah, sugar is there but very very little) and honey (local if available). You can eat chicken, fish and pork (even limited amount of bacon, NOT sausage cause manufacturers always put in red pepper for flavor) grilled and seasoned with salt (sea is best), black pepper (that's a seed not a night shade), lemon and or sage. eat sweet potatoes and you can use butter (never any margarine on anything) and cinnamon. Try to eat little or no red meat. Lettuce is fine (if your gut handles it, NO spinach), celery is fine. No alcohol, period.

The diet is hard, there's no taste, you'll lose weight pretty quickly which means that you'll be burning fat on your body that has stored up crap that hurts you. Do it for 5 days and you should begin to think you might be doing a little better. Stay on it for several weeks and you should notice a big difference. Now you will still have some pain here there and yonder (over use, etc), you will lose muscle/strength (going to anyway until the meds put RA into remission). Move/ stretch things as much as you can as soon as you can but do not try and act like an unstoppable force of nature as you once did or you will pay.

Okay, y'all go ahead and blast me. But this is what helps me gryd. I'm 13 weeks into MTX tabs (also plaq) trying to put it into remission. Even with the diet in two years hands and feet disfigured, now 153lbs (as of 4/27, 6' 1") down from the 195ish when this crap switched on in my body. Last I asked (Oct/Nov?) what the RA count/level was when blood done then it was 70 and the doc said mine was "quite active".

Okay, now to the mental where I can really get myself in deep do-do. So you hurt like hades all the time, can't sleep, can't forget the pain and think of anything good, no one understands or really cares, now I've told you to stop all comfort foods and the vice of alcohol, you've not felt good enough for sex in how long and your partner is scared to touch now anyway, meds are expensive, ins co's could not care less, you've used up vacation/personal time, money is becoming an extreme worry, you can hardly clean yourself, button clothes, heck walk from bed to the potty. You think you're being punished for some sin (you remember every one by now from the past) but cannot seem to find/earn forgiveness/redemption. What to do about the six inches between your ears? Well, okay.....forgive me for even suggesting something that might be less than legal in your state but there was a study commissioned by Richard Millhouse Nixon in the late 60's (?) that was done by Johns Hopkins (? and sp) which returned to say something like, -people that smoke mary jane will become temporarily stupid then they'll get really hungry and eat and then be sleepy and take a nap- . Yeah, that's it, that's all. Prez Nixon was furious and shelved the study results. So to recap, you become stupid and forget temporarily all the worries constantly on your mind, then get hungry and eat (be careful what) and then sleep. I wonder how many RA and other auto immune suffers have become residents of Colorado lately? I do know (as do ALL of you) that the mental part can truly be the worst part of the progression of RA and handling it when experiencing unbelievable unending pain is virtually impossible long term unless you take seriously strong and addictive opiates or other legal/prescriptive drugs.

Whatever you do you must get hold of the six inches between your ears gyrd1963, that is the most important space in the world. The meds will work eventually. I've suggested what I know via trial/error/research/reading/reading this board/etc. Do I hurt? I was pain free for four previous days because I'd stayed very strict to the diet I suggest because I'd had an attack of Retrocalcaneal Bursitis (OMG, felt like gout of the heel and tendons/muscles)....now for the previous six months had cheated the diet regularly to keep weight on by eating eggs and cheese and red meat which cause moderate aches and pains but not debilitating until the RB and not walking isn't an option I care for. So, did the diet for about a week, the Retro Bursitis was GONE. All pain everywhere was gone. This coincided with 12-13 weeks of MTX so yesterday at lunch decided to give it a test to see if the meds had kicked in and maybe getting RA remission...I ordered fried onion rings with my unseasoned grilled fish and broch. That was at 12:15 pm, by 6:45pm my left wrist was swollen and beginning to freeze lost all grip strength in fingers, elbow popping. Got my answer. Right now I've typed so much fingers hurt.

Anyway, I am not an MD. I have no medical training. If you follow anything that I have described that is your choice. I apologize if I have in any way offended anyone on the board or medical or legal profession. Like everyone else here gryd1963, I understand. You do what you must but get control of the most important real estate in the world which is the 6 inches between your ears. Best of luck Sir!

Nonightshades, No offense taken here. I'll examine your suggestions when I have the time later this evening, Coalltrain and 2leftfeet I suppose I should have asked the question: Will I get better over time living my old routine with inadequate sleep and rest and living a stressed out life? I think we all know the answer to that. In fact I know I can feel better. Give me 5 days at home and I'm there!

I know a couple of folk who have autoimmune diseases (celiac and RA) that have found some improvement in symptoms from following what they call an autoimmune protocol paleo diet. AIP or somesuch. (no nightshades, no grains/legumes etc)
I know that if I were in a lot of pain, I'd pretty much give anything the ol' college try. I personally stopped eating gluten years ago because I thought I might have CD. My IBS improved so I kept up with that. I've tinkered around with the AIP but my symptoms are pretty mild, so its hard to judge if i'm feeling better one day because of diet or because thats they way the wind blew.
I'm also interested in people's responses to the disease progression. We caught mine super early, my markers indicate I have high disease activity/prone to have more severe disease, but its not showing up physically much yet. Yay! But i'm still worried it will. My biggest thing is fatigue. I have to go to bed earlier and sleep in later. And, I'm sooo much more sensitive to temperatures both hot and cold. My heart goes out to those of you who are suffering and I hope you all find relief!

gryd,-- it took some time, but I feel so much better than I did when I was first diagnosed. It did take time to get to this place. I do not sleep very well, though. I am self-employed, work out of my home, which means I can lay down and rest when I need to. Or, I can go to my computer at 3:00 a.m. and get some work done.

As far as the diet/food goes - I had always gotten organic now & then, but once I got RA, I now eat organic whenever I can. I asked my vet, who I know treats large animals, who she knew took good care of their cattle, and now get my meat directly from that rancher. He has all grass fed cattle and hogs. For me, changing my diet did not help. Truthfully, have to admit, I probably was not as stick as I could have been. I eat very little fast food, partly because the closest fast food restaurant is 45 minutes away. But, I know eating better can only help, and not hurt.

Nonightshades has a point with the food. I don't follow the same plan but if I do NOT eat any fast food (except salads, and they aren't the best but still ok), don't eat anything in a box with a smiling girl (little Debbie snacks or similar), stay away from the junkiest junk, and only eat occasional bread, I actually do feel quite a bit better. It takes 2 days but basically, if I'm taking good care of my glucose through food, I am feeling better.

By taking care of glucose through food, I don't eat much in the way of any complex carbs. No pasta, no rice, no potatoes, and only a tiny bit of whole wheat bread or similar. Breakfast is made of eggs with vegetables topped with feta cheese or sharp cheddar. Lunch is a salad with egg or meat or maybe a stirfry vegetable dish, or just a can of soup and a few ritz. Dinner is what everyone else is having except the "carb". That's what helps.

Oh and regarding the steroid shot, I did not mean a cortisone shot for a joint. I meant a shot in the butt of kenalog or similar. I have gotten them for allergies and WOW - it's like my RA surrendered...for about 6-8 weeks. I have done this several summers and it makes my summer happy.

I have been making dietary improvements and it can't hurt to make more. I'm home again today. Still totally flaring and have been on Enbrel 3 months. It works fine only when I'm rested. Started prednisone again just to calm things down. What choice do I have? Also inquired to see how long it takes to get disability approved through my retirement board. The retirement counselor was apologetic when he said it takes between 1 and 2 months. I told him not to apologize and that 1-2 months sounds a heck of a lot better than SSDI! He also stated that so long as my doctor declares me disabled and provides the documents that I should be fine. Thank god I at least have this option.

I've found that rest is the key - and not only a good night's sleep (which evades both of us) but the fact of slowing way down with every step of every day. Also includes lots of breaks when doing anything. I'm learning from myself that I can work on something albeit slowly for 2-2.5 hours at the most then I have to quit. Very frustrating this time of year since it finally got nice out and I want to implement all the projects that I've been thinking about all winter.

Also every day I am finding easier ways to do things. I've made a couple modifications to my tractor to make it easier to get on and off and operate. Stuff like hand tools are pretty much out - even looking at a screwdriver now makes my hands cramp up. So I automatically grab my lightweight cordless drill/driver now - I bought myself a nice set of driver bits - big help right there.

Rakes, shovels, and the like are out completely. I use my tractor with front loader for everything now. That tractor has become my right arm so to speak - even use it to take the garbage out to the road now.

And I've always been one for a routine - maybe kind of obsessed with it all my life. I find that keeping that routine even more important now. Any little thing that throws off my daily routine with throw me into a flare.

Then any stress - I won't even go there. I've always practiced a drama free life and that is even so much more important now.

One consolation you have is your retirement/disability system - you are very fortunate but I know that is one of the things you have worked hard for all these years. Just image the stress involved being at your stage of all this and not knowing what it would be like to fight through the SSDI system.

And yes - your doctor's statement is paramount with this. I was lucky in both my PCP and Rheumatologist were on board for me and filled out all the forms asked of them and both wrote a nice letter in my behalf.