So… Saw my doc today my c reactive protein has skyrocketed and my ear is up. My doc cut my work hours to four days a week. I am doing everything I am supposed too. Cut back my activities, changed my diet, take my meds and supplements, try to stay positive and yet still have active disease. I am feeling very done in. Not looking forward to trying to regain the ground I have lost. I do not get to see my Rheumy for another four months. I am blah!
Why is it taking so long to see the doctor?
I worked for as long as I could but one day without realize it I bent down in front of my doctor and I could not stand back up again.
That was the day I knew I could no longer work and support my family. I was taking pain pills each day just trying to keep going but even with the pills it became to hard to do.
The pain pills only give you about four hours of relief and they were 500mg pills!!!!
I tried the diet plans and I changed everything in my diet but after a year or two I was just getting worst each day and my joints were really looking very strange and disfigured so when they told me about Enbrel and I read the entire list of side effects I remember telling the doctor that I would take it because I could not go on living like this any longer.
At some point everyone must make a choice of what is in their own best interest to do.
Some people do get relied from the different diet plans and if that works by all means do it.
I wish you the best of luck and please know that there is help and that you are not along.
Jim Hill
Jim is right, that is a really long time to go without seeing the rheumatologist if you aren’t doing well. I think that if your labs are wacky, you are cutting down on work, and you have active disease that maybe you aren’t doing so well!
You could try to call and get in earlier because it is kind of urgent. If you are losing the ability to do the things that you normally do that should be reason enough for the doc to want to see you sooner. How long have you been with this doc? Is it always like this or do you think the delay is just a one time thing?
I hate that this is happening to you and I will keep thinking happy thoughts for you.
Hi Kristen,
I'm not getting anywhere with my rheumy or meds, so I'm flying to the Cleveland Clinic, Ohio on Feb 15th. They are ranked #2 in the country for rheumatology, Wednesday night I completed their online appointment request and by 1 pm the next day they sent me an e-mail with an appointment time, a list of questions to consider asking during my app't, they have a medical concierge that helped me with my hotel reservation. I'm very impressed at this point.
I agree you need to see your rhemy I need to see mine as well. How high was your c reactive protein? I know how hard it is to keep positive. I already changed one job and am now leaving another as the stress and hours make me so sick. This is a hard disease and no one really understands what it is like. I have this and fibromyalgia . I will keep you in my thoughts and prayers
Kirsten, I don’t know what to say, except that I’m sorry it’s so difficult for you right now. Your job, the kids and then all the pain and problems that go along with this nasty disease.
I know, it’s not easy to get in to see a rheumy in Canada. I’ve been on a cancellation list to see mine for the last month. So many aching people, so few rheumatologists. Can your GP speed up your rheumy appointment? (I think the answer is no, or at least, that’s what my GP said when I asked her.)
One of the things that I find most difficult is exactly what you mentioned: “I’m doing everything I’m supposed to.” And yet, it doesn’t seem to help. I think, at times, we all feel powerless in the face of this foe. You do everything right, and it doesn’t seem to make any difference. You want to see the rheumatologist and you can’t do that either. I hear you, we hear you, and I hope today is a better day for you than yesterday.
I only see my Rheumy every four months. In my situation it is because there is not enough doctors that decide to specialist in this field in my area in my part of the world and I am prepared to travel 50 km each way to the closest city.
It is not an easy disease to diagnose which is one of the reason for different opinions.
I can only offer you some suggestions. Research and educate yourself on this disease so you know it almost as well as the Rhuemy. Be careful that you don't start thinking you have symptoms just because you read about them.
On an older post someone did put up a chart which showed the differences between PSA and RA and OA. this might help if you can find it.
Keep a journal, I use to write a comment every morning, afternoon and evening on how I felt and what medication I took and whether I got relief or not. I kept a record of all my joints that swelled and ached. This will give you an idea of exactly what is happening to your body. Condense this information down to one line sentances. e.g. Most mornings I.............. In the afternoons........By evening.......... This happens on average...............times per week. My point to this is to be as accurate as you can and to express this to your Rheumy. This may not be the case for you. Sometimes we don't express ourselves in a way that they get the message loud and clear.
Sometimes we have to learn how to get our message across better way. I now make sure that every word I use is relevant to coney what I have to say to my Rhuemy. This may not be your situation but I will tell you about mine.
My Rheumy appointment is for 7 minutes. He takes a look at my hands and I think because that is the most convenient for him for me to put them on his desk. I have almost pushed my feet right up next to him so he would take a look at them.. I even wore velcro sandles so I could whip them off in a flash. I understand your frustration.
In that 7 minutes he reads my blood tests and I ask him the results. I write them down. He reads his previous notes and writes new notes he writes all my prescriptions out and he expects me to be silent and has even shooshed me. He loves to engage in conversation about himself or the weather and can manage that while he is writing. I am not there for polite conversation and I have to make every sentence of mine count to get my troubling symptoms across or to ask any important questions I need answers to. I need him to hear me in the most concise and shorten version that I can explain myself. I really don't think he gives two hoots and he entirely bases his findings on my blood tests and what I say is completely insignificant to him. In the scheme of things it probably doesn't really matter. It is my need that I need to express myself and be heard and I believe it is my right to do so even if he thinks it unnecessary. I am not paying him for me to listen to his small talk.
Look for the symptoms which are unique to PSA or Psoriasis if you have that. Like the sausage toes, the lifting nails, the type of P skin and scalp, the enthesitis and the things that are so common to many of us like the bony formations and swelling, disfigured joints, lower back problems and there is a blood test if the lower spine is involved and I can't remember the name but it is to see if you have a predisposed genetic marker I think it is the HLA 28.
Front this Rheumy with these in question form. Short concise and to the point don't ever ramble as some shut off completely as this is how the get so much done in a day. It can all be about their income to many of them. Ask how he came to his conclusion and what criteria did he use to reach his opinion, ask him how can he be so sure he is right and your other doctor was wrong? How did he completely rule PSA out? Tell him your not satisfied and you are not ready to accept his opinion when it conflicts with your previous Rhuemy's diagnoses.
Ask him if he can recommend someone for a second opinion to verify his diagnoses especially now that you have got two opposing opinions and you are totally confused by this and need this to be clarified for your own satisfaction of getting the correct answers. He won't like this one little bit being confronted and questioned, but your not there to win a popularity contest. Your there to get the best possible help for your symtoms and find out what is causing it. Doctors are not gods and so many think they are, he sure needs knocking off his pedastall.
If this is too daunting to front him or if you are not prepared to wait, then I would write him a letter. Stick to the facts and do not include any of your feelings or opinions in it, stick to the questions and keep it business like. Treat him like you would any other service provider that you pay for. If the service isn't up to scratch you complain in writing or person or you don't go back.
Try requesting an earlier appointment because you have deteriorated.
I do hope that my experiences will help you in some small way.
Was it your rheumy who cut your work hours and told you about ur c reactive protein skyrocketing....if so, why is he not seeing you for another 4 mths..shouldnt he be monitoring u...seeing u in sooner for f/u. If it wasnt him who did the tests then still the family dr needs to get into touch with him or you need to push ur rheumy into seeing you sooner. U r not well. Who normally looks after u , administers ur meds...u know prescribes them, changes the dosage etc? Sorry ur disease is active even tho u r doing your best to control it. What did ur dr say who did the tests...should u be switching to a new medication or increase dose or find a new balance..it's important u try to speak to the specialist about it if u r just going to see ur dr. Now that u r not doing as well, the specialist should be more knowledgeable..we hope! Keep positive thoughts. Take care.
My family GPS manages my meds except for Remicade and Arava. She s the one who is reducing my hurs and follows my lab work the closest. My labs are sent to the Rheumatologist down south. I am not sure when he gets them. I am going to try to see him earlier but, like Seenie mentioned it is a long wait in Canada, up north is probably worse. It is free but it is a long wait. My Father has suggested I should fly to the States but financially that is not an option. I am going to speak to my Internal Med Doc to see if they can get me into my Rheumy sooner. They may have some pull as I have worked closely with them in ICU for 15 years and we have a good relationship. When I was on mat leave they keep asking when I would be back to work to because I was ‘too good to be gone that long’. So I might have a chance through them. They have been great with my reduced work and checking in on me so odds are in my favour. I am going to see them Monday. Anyway, must try to sleep. Cause that seems in short supply right now as well, which I am sure is not helping. Thanks for all the info/support. I needed it this weekend.