Look up Baker's Cyst and see if this describes what you feel.

Welcome Debora, glad you found the board. I too was diagnosed in the summer of 14. Curious what your side effects were with arava since my rheumy has mentioned about trying me on it. I done Mtx for 8 months but had to stop due to elevated liver enzymes.

The pain behind your knees you describe is very familiar to me. I haven't had any troubles there in months but do remember it well. Most of the time you kinda know what to expect but then occasionally you get that new spot that's never been affected before. It makes you wonder if ra can even get you there. If finding out that I have joints in places I never knew I had. My left hip for example is hurting bad in my groin area making it hard to lift my leg up say to go up stairs or lift it to push in a clutch in a car. Sometimes the pain is on the outside of my hip which make it uncomfortable to lay on my side or walk. I'd say it's kinda the same for the knee. I have hurt in spots for a couple months consistently and then it leaves and on to another location. This disease is so strange and seems to have no rhyme or reason.

I say go for the job and try to find something that isnt gonna be to strenuous. I have days when I think I am not gonna make it but I usually manage to get through it. I also have good days when I'm glad to be there. I find it helps me to keep moving and doing as much as I can, but just have to try to not to overdue it. Some days I'm just down and out no matter how bad I wanna do something I have no chance. Good luck and hope your knees feel better soon.

I have chronic knee pain. I would say my knees and feet were hit the worst with RA. Maybe because I have OA there as well. Most of the time my knee pain is bilateral and feels like iike is being stabbed in area below the knee cap but I have felt pain to the point where it was more widespread and I feel the pain goes right through and to the area behind the knee whether it is tissue or joint, I don't know.

As far as work, hold off as long as you can and see how you feel and what the MRI says. I would think stress of work could make things worse and would look for a part time job firtst. I'm trying for disability at the moment as I can no longer work full time or even part time.
Greg

One more thing. I have knee pain now and the tissue behind the knee hurts today. RA affects more than our joints. I had a flare last a month and I had muscle pain and spasm thoughout my legs, tissue pain, and pain in both tibias. Synovitis can be in more than just the joints. In my case I assume I was getting worse. I think my rheumy viewed this as progression as well, at least that's what he states in my disability application.

Hi all thank you so much for your responses as I have been worried and not feeling well.
Deserving: Baker's Cyst sounds possible although I just cannot physically feel anything that protrudes from behind the knees. They both feel EXACTLY the same too which is weird. So, I suppose I'll bring it up to the dr anyway. Ty for the suggestion!
PW39: unfortunately If you get on Arava you will have to be cautious for elevated liver enzymes as well. It also stays in your body for 2 yrs after discontinuation. I also understand the pain in your hips and knee joints. My pain right now specif feels like tissue pain and even has the sensation of burning like it's stretched inside too much but I don't stretch it and also pain radiating up n down. My fear is that I've suffered some damage internally from last yr when I first got sick my whole body was affected. That's what happened to my shoulder when I tore my rotator cuff just from probably driving while my arms were in so much pain I could hardly lift them. I would cry just turning the steering wheel I didn't realize what was happening but glad now it's fixed. But, I'm figuring out the integrity of my tissues has been compromised and I have underlying dermatomyositis as well. I will talk to dr n see. This is going to be after Oct tho after my infusions! Don't know if I should wait that long...well I hope your hips get some relief and your dr gets you on something else soon you can't wait long. Are you on infusions as well?
Greg: thank you, thank you for your post! My feet hurt me terribly too. I just recently moved in with my sister since I'm not working n trying to figure this RA life out. She has hardwood floors n teased me the other day saying I always look like I'm ready to run out the door or go to the gym cuz I have my tennis shoes on ALWAYS. I cannot walk around without them because I feel like I'm breaking all the bones in my feet. That plus the knee pain I must look like I'm walking over hot coals. I'm sorry about that stabbing pain I can really relate. However I don't know what OA is like. I do tend to agree with you about working tho. I've been trying for disability n now waiting for court date. I guess that can take a really long time. When I first went to the rheum, he said I wouldn't need to try for that cuz he was sure he'd be able to have my condition reversed, and I was super sick. That's what he said at first. Maybe he didn't realize yet what he was dealing with. I don't know how much longer I can go without an income tho although in the end i can't see being able to work. We'll see.
Thank you to all of you for replying it means so much to have some support. I have not had any of this since my diagnosis. Wish I had known you were here earlier.
My best to you for a wonderful pain free weekend

Hi Debora,
We have the same problem areas: the knees and feet. Severe pain in those areas are why I can barely walk, can't stand and teach, and cause severe enough pain to keep me home from work most days. There' s more to it than that and we didn't really explain the patterns of pain and fatigue in my disability application nor do I think it matters. I can usually get by working one or 2 days and then the pain in these areas becomes more severe. With this increased inflammation I get more tired (though I'm always tired) and get brain fog, feel sickly, wiped out, and incapitated for days. I'm still learning about these patterns so I don't think I explained it so well to my retirement board but I was pretty clear on all my symptoms but really didn't go into the brain fog because I don't have the official diagnosis of cognitive impairement which I'm quite sure I have but wasn't going to speculate about it when i have enough wrong with me to prevent me from working.

My general practioner told me that dotcors hate disability cases. I've also been to doctors who claim they will cure me. I think it's their ego or something and I don't know why they think they know more than previous doctors. I think we should have a say in whether or not we can work. My current rheumy gave me that say and simply believes that it would help my condition to get me on a lighter schedule so he did it for me. If you look for a rheumy like mine you'll eventually find one. It took me three tries and I found him. What is your rheumy saying about your condition now? Will he back you on your disability? In my case my doctor had to complete a massive application which ended up being 13 pages but my disability is through my state teacher's retirement board and moves a lot faster than Social Security. I already have a date of October 6th but I won't be there as the meeting is private. They will notify me by maill after the meeting and let me know if they need more documents or if I pass, because my doctor is on board and gets to make the decison about me I don't think they can deny me at this point.
Greg

It really sounds like Baker's Cyst to me. I had one burst in Feb. I didn't even know I had them.

It was the worst pain of my entire life, including child birth and RA. Please get your doctor to check it out. They may be able to drain it before it seeps into the knee tissue.

Sorry to welcome you to the RA forum! Sucks to be us! LOL

Wow Greg. Where to begin. My feet and knees are the biggest areas while under control if you can call it that. When I wake up each day, I can't make fists; my hands are sorta stuck in the steering wheel position. I guess I don't complain about my hands hurting or even sometimes my neck cuz I'm mainly worried about my knees.

Now when you talk about the brain fog I have that really bad! I just don't know how to get that across and you gave it a name just now. Is cognitive impairment something they use in disability cases? Back in '97 when I first got sick with other things I was in a coma for a month and long story but it took me a yr to recover. I went to college while on rituxan and got my accounting degree. Now here I am, like you said feeling too sickly to work and having that brain fog.

I was in Columbia, SC and rheumys are hard to come by. After he said what he did, I got the feeling he was against dis right off the bat. On the last decision it said my condition was disabling enough to prevent me from working but it was thought that my condition could improve. I have an advocate now that has all of my records who handled the appeal and we're just waiting for a court date. What happens if I decide to move to NC and all of this is in SC? Can it just transfer easily? I don't know how that works. I haven't decided if I'm actually moving yet or not this is a big mess.

It would be nice if I could easily try to see another rheumy. For me, even the copay would be tough right now. But, depending on how the disability turns out, and if I wind up moving, I may have to change rheumys anyway.

Well, I don't see yours being denied. But I just feel awful about the circumstances. My daughter is a teacher and I'm so proud of her. Most teachers love it which I'm sure you do. But when we're feeling "sickly" like we do, we can't find the fun anymore in our work. I'm keeping my fingers crossed for your decision...
Have a good Sunday - Debora

Now you're scaring me MarleneJ! Lol. Im not supposed to see him for awhile. Wonder why he didn't mention that when I told him at my last visit. He felt the backs of my knees thru my jeans and said he didn't feel anything. That's when he said if they still hurt next time he'll want to do an mri. And I don't feel swelling either.

I'm gonna call the office and have the nurse just ask him about it. They are 4 hrs away now since I just came to my sisters

Thanks for the welcome!!

Brain fog can be termed cognitive impairment or cognitive dysnfunction and it sure is a valid reason for teachers her in CT. I went to a neurologist to get tested but for now he think sleep apnea is also involved so I have to go that route before he send me to his neuropsychologist who would test for the cognitive impairment. I don't think I'll need that for my case now. I really couldn't tell you what would hapen if you move as my disability is very unique and through my state teachers' retirement board. Knowing how hard social security is I wish your doc was a little more persuasive on your behalf. Does he care if you even get it? Mine wrote that it is "it is likely that the patient will not regain his functional capacity to return to teaching", and "no functionality to remain a teacher" and he used words like severe, worsening, and progressive throughout. He wrote it with the express purpose of getting it to be accepted which I kind of thought a doctor on my side was supposed to do. He was honest but when we sat down together for multiple visits to complete the form it was to be honest and concise but with getting the disability as our main priority. The doctor couldn't run half of these visits though insurance and he didn't care. I offered bu he wouldb't take a dime.
I do love teaching but CT state law gives school districts the right to terminate disabled teachers even if they have tenure. My job is not currently threatened but I was pretty nuch told on more than one occassion that this was clearly my best option, if not my only option!
So now I'm waiting an working 2 days a week which is all I can do.

I hope your advocate gets the job done for you!
Greg

Well Greg, whether u use the cognitive imp for your case or not, at this point it sounds to me like you don't even need it. But, for your own good you should get tested especially for the sleep apnea, that one first!

To be honest, after I asked my dr the 1st time about disability and he said that about reversing my condition, I felt like if I came into subsequent visits asking about it again n again, he'd think I just didn't wanna work. So, after I continued to stay sick, labs kept showing high inflammation despite infusions, my continued need for pain meds, complaints via phone calls, had shots to the shoulders then eventually surgery cuz he wouldn't listen that something was very wrong (is it so weird that RA can cause a compromise to the tissues in the shoulder joint therefore my daily movements tho very small caused the rotator cuff tear?) plus now I've complained about my knees n I've been telling him I can only walk certain distances.....so, don't you think when info is requested for my case he'd be compelled to write it up as a disability? I mean there are other things like I had nerve conduction testing that was normal but the symptoms of nerve damage in feet n lower legs and other daily pains I have to deal with that he knows of.

Idk, reading about yours sorta worries me now that I've gotten this far that I didn't actually discuss with my dr. I don't wanna waste this final hearing opportunity. But I guess a lot of ppl don't know what goes into their reports and what their Drs say. Maybe I'm over thinking and worrying too much.

Well, you have a good dr. I can say I have a good one too in that he knows his stuff but....I still have only been with him for a little over a yr. my GP has been with me for 16 yrs. so if I don't trust something I just go to him n tell him what's going on. Bad thing is they are both so far away right now.

Thank you for all your help btw!

I understand that you didn't want your doctor to think you simply didn't want to work but I have to tell you that my inflammation numbers come back normal and they aren't as good of indicators as once believed but that's still a plus because old school doctors who may review your claim may not be up on the fact that high Sed rate or CRP don't about in a high percentage of us who are inflamed. Plus you had surgery. Yours sounds more severe than mine though mine has gone worsened considerably and seeing you are going through SSDI yours needs to be worse as they are stricter than my retirement board who hears 60 cases a year vs 6 million! I have worried about the fact that my Sed rate has alway been normal, though I had a high Vectra. They could ask for an updated Vectra but even if that came back normal RA meds can lower those numbers and still not reduce inflammation so my doc would then have to explain that and they would have to accept that as his word supposedly prevails. It would just be a waste of a month of time and cost me more money!

I do think you should have discussed it with him. He is your doc and being home can benefit your health. I don't know what others do but my doc and I discussed it and did the application together. I told him flat out that I can no longer work and that my employer said I had to do this now, or in the near future. That being said he put nothing in there to lead them to believe I'd be able to teach again though I believe that is his honest assessment.

Is there anything you can do about it now? Would you get another appeal? I imagine they'll go with the fact that you have severe RA and may figure your doctor wrote what he did to cover himself.
When will you find out?

Hey Greg. You are absolutely right, I should've had another discussion with my dr. I'm waiting on getting all my health records downloaded to the online portal so I can look at everything . I wonder if that part will be available to me. I did get the ortho records today they came faster. At least I did get to see that I had a full central thickness tear of the rotator cuff and chronic synovitis. There was chronic degenerative type blunting of labrum and possible SLAP lesion. There was a lot of "chronic degeneration" of everything and attenuation of the cuffs.

So, this to me shows probably severe RA caused the integrity of the tissues to be compromised in such a way that even less than normal activity tore my shoulder. I went from being very normal and working 40hrs a wk being busy like a lot of people to getting hit with this. Then I practically suddenly sat almost immobile for about 8 mos and in that time began to have the worst time with my arms (along with everything else) and that's how it came to be that my shoulder got torn. The weakness in that short period just baffles my mind!!!

Well, I don't know Greg how much longer it is supposed to take. I suppose I can email the advocate and see if he even knows where we stand on the calendar for our hearing. This is my appeal and I believe it's the only one you get. I got turned down twice n then he did the appeal. So I think since it's going to the judge, it's final. Unless there is a change in health status I suppose.

Anyway, if you worked today, I hope you had a good and pain free day. Your decision day is getting close!
Take care - Debora

Welcome aboard! Glad you found us.

I would definitely have the doctor look at that knee again. Cysts are possible, but it is also common for muscles and tendons to become inflamed just like our joints do. Some of my worst pain is due to inflammation from surrounding areas and not the joint itself. So - be sure to follow up with that.

Good luck on the disability hearing. Keep us posted.

Linda

I wish you had an attorney. They would know how many times you can appeal and would know how to get it done. They would get he documens from SSDI and see the rationale for denying you in the first place. It's too important not to have the best representation at your disposal. Your situation doesn't sound good but maybe your doctor is right and some things will improve. Are youo applying for all your conditions? Maybe you are young enough where they feel there's time for things to improve though I'm not sure how they could even assume that with a progressive disease. I do hope they improve for both of us. I just think working 40 hours a week is counter productive and part of our treatment should be reduced hours and rest.
Is your appeal in federal court? If not you still can do that but it takes even longer and costs more. http://www.nolo.com/legal-encyclopedia/social-security-disability-appealing-denied-claim-32401.html