Frustration and pain | Arthritis Information

I am needing to vent. I have been taken off of MTX (it never did a thing for me but make me sick) and am waiting to hear from insurance on Enbrel. In the meantime I hurt so bad everywhere. Can't hold anything or grip with my hands, can't raise my shoulders at all, my right hip hurts so bad and then there are my ankles that feel like one wrong move and they are gonna snap and my poor toes can't take any pressure. I am quite a sight trying to walk. I can't carry anything like my purse or a bag of groceries. It just hurts so bad. I am still working but it is a real struggle and my co-workers look at me like there is nothing wrong with you, why are you acting like your in such pain. If they only knew how it feels.

I have my appt with the ortho dr for my hip on Thursday and if he wants to do surgery then I won't be able to start the Enbrel. How am I going to get through this? Prenisone is not helping at all and my stomach is so torn up from it. This really sucks.

Dali

This is what I do when I am in that kind of pain and I do it with the Dr. o-kay. I just raise my prednisone intake. 5 extra mgs can so much make the difference between a good day and a day full of pain. I have actually gone as far as 20mgs allowing me to function with-out so much pain. Inflamation and pain usually equals bone erosion. I used to be so afraid of prednisone and so afraid of upping the dose but I hate being crippled even worse. Good luck and hang in there. Oh, at this time I am at 15mgs of prednisone. I was at 20mgs for about a year and have been down to 7.5. I am sorry you are hurting so. It sucks to be in pain and sucks even more to have to go to work in pain! I understand the ankles feeling like they will snap at any second, mine are like that as well. Have you tired the lidoderm patches yet? They are a bit pricey and you need an rx but I cut them in half and wrap them around my ankles. It takes three patches, which is the limit but it does help to take the edge off.

I have tried them on my hips and they don't help much there, not sure if its because I have too much fat there or what!

Yes Dali, I got my FMLA paperwork done.

I hate waiting to find out what my next move with this disease will be and I can only imagine the damage that is going on during the wait.

I am taking 10mg in the morning and 10mg in the evening just to get by for right now and its ripping my stomach to shreds.

I just keep thinking what if I can't afford the Enbrel. What if I have to have my hip replaced and its a good month before I can even take any RA meds. My fingers and toes are starting to curve already.

Brenna, does your work not offer insurance coverage for you meds? And if it doesn't you should be able to apply for medicade or state aid. Not knowing what state you are in, or what your states rules it is hard to say for sure, but in Iowa there are programs in place to help people. Until they would qualify for SSDI.

yuppers I have insurance and prescription insurance but its not that good so i still (estimation) would have to pay 500-700 a month out of my pocket after insurance and make too much for any type of assistance. I have 4 kids and a nice fat mortgage.Brenna, there is a organization called Healthwell that will sometimes give grants to help people with the cost of meds, even if you have insurance. THey have been helping me for the last couple of years. http://www.healthwell.org Check it out, it never hurts to try! Good luck to you!Brenna,

Others have given you better advice than I could on how to handle your
pain. My comment is about the way you (and I) walk in severe pain.

A couple of years ago, my arthritis came back with a vengenace and
attacked joints all over my body. As far as walking went, I had pain in
both knees -- not always at the same time, both ankles and feet and
toes. Everyone always asked me why I walked the way I did. My answer
was to have them think about how they'd walk with a sprained ankle on
the left and a torn cartilage in the knee on the right. Now add in toe pain
on one side and arch pain on the other. You can't limp on both sides.

My favorite description of how I walked came from a co-worker who said I
walked like a South Park character.

Since then, when I walk like that I laugh even with the pain.

Jennifer

dear brenna,

I know exactly how you feel! I had heart surgery on the 1st of Dec., couldn't take any arthritis medication, so I took Ultram & Oxycodone (suggested by the heart doctors, but I've since read that Ultram isn't good and can cause joint pain) anyway, a general practioner gave me gabapentin for my neck shoulder pains and that helped until I could get to Remicade and back to methotrexate-(once a week) and prednisone 15 everyday! You need to keep bugging the doctors to help you. Call everyday and say I'm in pain you must help me. This is the most awful kind of pain, doesn't let up and goes from one 'joint' to another. I tell people, it is like having a stiff neck and that sharp pain you have---well, it never quits! I understand. After 2 1/2 months and 3 doctors I'm finally improving. 'hurts'

(See post on Feb. 9th, please RA & Surgery)

I agree that gabapentin (Neurontin) can really help, especially if nerves are inflammed or involved. I am on a low dose long term for nerve damage caused by knee surgery & it has been a lifesaver. Welcome to all the newbies posting! Pat

I'm so sorry you are not doing so well right now. I Hope you get some relief soon. I'll keep you in my thoughts to find some inner strength.

-Jessica

brenna, I can't say I know exactly what you're going through, but I get up out of bed in serious pain and when I go to sleep its the same. I'm on prednisone and MTX and they've reduced some of the swelling but my knees and ankles are always so sore. I sit too long they hurt when I stand up....if i stand too long they hurt. I also have to go to work everyday but usually only make it 3-4 days a week. I've used all my sick leave and now using vacation days. I'm waiting on a decision for me to go out on disability retirement. I don't know how long I can continue to work like this. I surely feel your pain and I'm not as bad as you...I can only imagine. All we can do is keep on hoping that you will soon have some relief. Stick in there as best you can.

thank you everyone for the encouragement and advise you have given. I see the Ortho this thursday for my hip so hopefully I will know more about when I can start on enbrel and I also see my rheumy next Tuesday. For some reason she is thinking my hip problem is not related to my ra. I beg to differ. I had to have 75% of the cartlidge in my hip removed 3 yrs ago because of the RA so I can only imagine how the bones look now constantly rubbing. My Ortho will be able to tell me if its RA related or not and I'll have him call her also. All I know is that she keeps saying "hip replacement time".

I just got in from putting my horses in their stalls for the night and feeding them and man it was tough out there. I could hardly work my hands to get the stall latches open and I couldn't lift the grain buckets over my head to dump the grain in their feed bins so I had to again open the stalls and walk in each one to pour the grain. I couldn't cut the wire on the hay bales so had to get help to do that. I want to be back to my ole self, throwing hay bales and climbing fences and to sit on the back of my horses again!!

Have a good night all.