Been a very, very bad weekend. Starting on Thursday and by Friday it was all I could do to walk. Somehow I made it in to work that night, but by the time I got off on Saturday morning I was about done. Couldn't even hold my razor, couldn't put my shoes on, all I could do to hobble and I mean hobble to the bathroom. Taking Aleve like I own the market on it, can't get a hold of my RD, doesn't return my calls. At work right now and my ankles are burning they hurt so bad. My forearms and upper arms are so sore. I've loss all kinds of muscle mass, 4 months ago I weighed in at 185 pounds, down to 150 pounds now. Can't wait to get home and take a double dose of predisone and when I wake up, pray that I can walk better, until I come back in tonight and do it again. Hoping my GP is in this week, he was out last week, he seems to be the only one that will actually give me anything for this pain.
Phil
Oh, Phil, you need to get some help with this. If you need to switch doctors do it, but don't keep going like this. You need to have a sense that your doctor hears and understands you, and is at least trying to find the right medication to control your disease.I was exactly in the same situation a year and a half ago. Couldn't even get dress alone, walk, it is a horrible sensation. My GP saw me and couldn't believe my state and gave me the name of another specialist. I changed doctors and this one started giving me a bomb of medicines to control the RA because it was really bad. Now I am on Mtx and Humira and even with those the treatment sometimes I have some crisis, however never that horrible. I can have a bad day but mostly I can go on with my life.
Talk to your doctor and if you feel he/she is not the right for you start looking for alternatives. You cannot go on like that.
Good luck?
Unfortunately the rheumatologist that I see is the only one in my area that is on my insurance, if you call driving 100 miles one way my area. Trying to deal with my insurance company to get one closer that is not in my network, but if they will pay for it in network, just can't afford out of network cost. Yes Roxy, I checked into the short term disability and after looking at it, just wouldn't be able to afford to pay my bills on what I would get. So until my insurance company breaks or I do, I guess I will have to keep dragging myself in too work on 3rd shift and hope that the MTX does a sudden kick start.
Phil
Hang in there Phil, we are all there behind you. I know what you mean about dragging yourself in, its agony isnt it!! And nobody around seems to have any concept or care, so you plaster a smile on your face and take another pain tablet, well thats what I do anyway!
And tell me about the hobbling!!! One morning I had to crawl to the bathroom as I simply couldnt walk on my feet! I am still hobbling if I dont take painkillers as I have only been on MTX for 3 weeks.
What about some painkillers to go with the Aleve or another anti inflammatory? I take Mobic (a double dose for now - an anti inflammatory) as I took so much Voltaren for so long I got stomach ulcers. I also take Paradex which is paracetamol and some other slightly better ingredient and it helps with the pain. Are you managing your pain enough do you think?
Feel better soon mate
Wendy
I know exactly what you mean Wendy, I've had to crawl to the bathroom myself, actually the most recent was this weekend. Only meds I am on is MTX 15mg and Predisone 10mg. My brother has asked me if I was on an anti inflammatory also (he had RA when he was in his 20's, but it has been in remission for about 10 years now). I asked my RD for something and he said to continue on the Aleve. I've asked him for pain killers and he said he would rather not right now. This was when I was actually in his office. I've called and left messages, but so far no call back. So no, my pain is not being managed. I will pop about 1000mg of aleve a day in hopes that it will work. And unfortunetely while at work I am very, very, very irratable, which my workers are well aware of. And if I do sit down for any length of time my boss wants to know why I'm not out on the floor more. Oh well, somethings got to give, just don't know which way it will go anymore, but I know I can't live like this, or I won't live like this.
Phil
Phil at the risk of giving medical advice when not an MD, (I am a registered nurse tho not working as one now) please PLEASE do something about this pain. Its unnecesary to be suffering like this.
Surely something as innocent as Paracetamol (nothing asprin based) will make all the difference. You need to be using a triangle of AIs or NSAIDs (anti inflammatories), DMARDs, a disease-modifying antirheumatic drug (your Methotrexate) and then if you still have pain, somthing like the Paradex I take, all prescribed by my RH.
Is that a high dose of Aleve or normal, because there is only so much it can do, you need to deal with the pain and simple Paracetamol, known as Acetaminophen in the United States so google tells me, will help. It helps me and I know I wouldnt cope without it. I know you cant take too much of it, keep to the recommended dose, as it can be toxic to the liver, but only in HUGE doses can it be toxic, like in an overdose.
At the risk, again
Good luck and I do hope things improve for you
Wendy
phil, if you can't change your rt doc (which i did, thankfully) try to get your pcp to work closer with you on the pain meds. believe it or not, 200 mg of celebrex has made a tremendous difference for me along with 20mg of mtx. those are my mainstay drugs. viocodine is my emergency, i can't take it any more choice. talk with your pcp. you have to take charge; be responsible for yourself. don't be a victim. there is help out there in this god awful american health care system!
Phil, your situation is beyond unbelievable. I think you should make a trip to the emergency room. This should flag someone's attention that you are not being treated adequately.
Again, call your insurance company and rant about this doctor not even returning your calls and leaving you in such pain that you cannot work.
The physical state you are in is putting you at the stage at which most people would be seeking to go on disability. You need to make that very clear to both the doctor and the insurance company.
But since they are not listening, get your GP or the ER doc to do something. This is not acceptable.
By the way, no job and no bill is worth this misery. I'm in the process of going on disability. I have no way to afford this either. But I cannot live in that intense pain any more and not functioning. Your life is the most important thing here. Without that, you have nothing else.
I really wish they would help you. I wish I could pack up my Rheumy in a box and send him to you. There has got to be an answer to you getting the treatment you need.
Don't just accept living like this. If you keep pushing yourself, you are going to end up in the hospital with something much worse. My kids watch me like a hawk on that. When I get to certain level of being sick, they tell me to quit. They've already seen how bad it can get. Please give yourself permission to take care of yourself no matter how it affects the rest of the world.
You are important. You have a right to decent healthcare and you are not getting it.
I feel angry for you because of the way you are being treated. You have had this going on for a long time now. Enough is enough. Raise hell and get some help.
This past weekend and week for the very first time in my life I thought about quality of life and realized at this moment in time, I have no quality and if it was even worth continuing. It was a passing thought, but still a thought that had never entered my mind before this. I see my Orthepedic on Friday, last time I had asked him something for the pain and he said you need to talk to your RD, LOL, nothing like passing the buck. However, I do know that something has to give soon, I cannot go on much longer like this. I hobble around at home and just want to scream in anger. I tried to call my RD back today, but he was out so left another message. Also contacted my insurance company and they said to get a referral from my GP, which I will tomorrow. Then its just waiting for the paperwork. I know that I am taking more Aleve than I should (recommended dosage is 1 pill every 12 hours), but its all I have right now and its hit and miss, just depends on how bad the pain is. Right now my ankles are burning.
Phil
Phil, I certainly know where you are coming from. When one is living with unrelenting pain those thoughts come to mind whether you want them to or not. The problem that there is no legitimate reason for you to suffer like this. You have to hang on to that there is help out there and you deserve it.
I can tell you are trying very hard. Your GP can prescribe you something stronger. It sounds like they need to up the prednisone and the MTX plus give you something for pain.
You have gotten worse from when you first started posting and now I am worried about you. You must communicate very clearly that (1)you are in extreme pain that is making you have thoughts of not wanting live, (2) it is directly affecting your ability to work, (3) you cannot afford to stop working, (4) your ability to function on a daily basis is being affected to the point where you can barely take care of yourself, (5) you are aware that better treatments are out there and that you are demanding that you receive them.
Truly, I think if you got on the right medicines, you would not be in so much pain and could probably continue to work. Your doses are not that strong. And, they haven't even tried biologics yet. There is a lot of hope for you as far as improvement.
This doctor is really screwing you over by not even replying to you. He should have a back up doctor or something. And, no, Alieve is not enough for the kind of pain we suffer.
If you can't get any relief immediately, then insist that your GP checks you into the hospital for a full evaluation.
I hate to say this, but I think you are going have to get in somebody's face. You deserve better treatment. Do not give up.
I got ahold of my GP today and he prescribed me loratab's, but their not doing much good, but at least he did something. As of now, my ankle is burning it hurts so bad, was hoping to have a 3 day weekend to rest it up, but just found out we have to work the weekend. Figures.
Phil
Phil,
I second what Deanna said - you need more and stronger meds; you deserve better treatment from the rheumy than you are now getting. And I have found that the docs tend to say "Well, you are being managed by your rheumy" and they hesitate to interfere.
Hang in there .... please don't give up the fight - and keep at your rheumy until you get a 'cocktail' of medications that will help you. The US health system seems crazy to me, but these docs and specialists are being paid to do a job; it is just a shame that some of them don't care enough to do it properly.
Keep us posted, and be assured that things can improve with the correct treatment. Nag and harrass until you get it!!
As much as we all depend on our RD docs, if mine is unavailable I always use my GP. It seems like your GP is decent... Your GP could refer you to his/her favorite RD. Once you have been seen by the RD I bet your GP could see you on a regular basis, only consulting with RD as needed. Then you could get treatment nice and close to home.
Sometimes I go to my every 2 months RD appt and end up meeting with a physicians assistant. It happens 1 or 2 times a year - no big deal. My last date was with the PA and she saw I was in trouble and wrote me a pred script to get me through a rough spot. The point is that even a PA can monitor your condition, then for sure an MD can.
Phil, Are you sure the lortabs are not helping? They worked fairly well for me. You may need to go to a clinic and get a strong injection of pain med. Make sure someone drives you or they will not give it to you. It will give you relief and very high (I don't like the high but some people do) but it may give you enough relief that the lortabs do work. Good luck. Feel your pain. I have had suicidal thoughts, especially in the beginning but have decided there are so many little things to live for and what would that do to my family !!!!! Get your pain stabilized then you will have a different outlook. My thoughts are with you. Rox