Newly Diagnosed: Tips on handling pain, crappy doctors, and how to cope?

Newly Diagnosed: Tips on handling pain, crappy doctors, and how to cope?

Okay so this question may be a bit open-ended but I feel very lost and I was hoping I could get some advice and help!

So I am 25 and married. My husband and I moved to across the USA to a fairly small city about 4 months ago and are very new to the area and alone besides family. I started having joint pain in my fingers, wrists, shoulders and feet about 8 months ago but thought I was being wimpy and tried to push through it. Finally I went to… read more

A myRAteam Member said:

I live in Canada, I'm 49 and I've been battling this disease off and on since I was 15. It's been really bad again for the last 10 years. I have found that specialists are often too busy and perhaps a bit jaded. They see 30-40 people just like you a day and forget that this is new to you. I encourage you to educate yourself about the disease, the different treatments, alternative treatments etc. some of the mess such as the biologics, seem scary when you read up on them but in my experience they are the way to go. The biggest risk of them, I think, is that they lower your immunity, possibly making you more susceptible to colds, flu etc. I have found ways to make that risk manageable, and would choose the biologics and all their possible risks over the pain any day.

I have also eliminated starch and processed sugar from my diet. This made a huge difference. While it is difficult to do when you are feeding a family, and sometimes the cravings are so strong, I find that if I cheat, I swell up like the stay puft marshmallow man. This makes it easier to resist in the future.

The other major change I have made is using medical marijuana. I was very reluctant to start (never having used illicit drugs in my life, for real) but the people I spoke to and the research I did, convinced me to give it a try. Boy am I glad I did. I grind it and make brownies with it because I couldn't stand smoking or vaporizing it. Since February last year, I've gone from using a scooter everywhere, to being able to walk for pleasure as well as walk into most stores (using knee braces). The weather still affects me so I still use my scooter on bad days, but I feel almost normal at least some of the time. I take the THC variety at night which helps me sleep. As a matter of fact, my husband says I hardly scream out in pain at night when I move, any more. During the day, I take the CBD variety. You do t get stoned, but it helps with pain and inflammation.

posted almost 4 years ago
A myRAteam Member said:

1. Get another rheumy asap.
2. I found when I was first diagnosed, I went through the classic signs of dealing with a death. I was extremely sad/depressed, then I was angry and finally I was able to just accept the diagnosis and go on with my life. You may find yourself doing the same.
3. As for meds: generally you start on steroids; if these are not effective then Methotrexate is given; additional meds such as biologics can then be added to the Methotrexate depending on how well you are doing and then the steroids can be deleted. As for pain, as your rheumy if he can give you something to help. Just remember that the pain meds are helping with the pain NOT with your RA. It's very important that you get on meds that will help control the RA from advancing.

edited, originally posted almost 4 years ago
A myRAteam Member said:

I am so sorry you have RA. When I was diagnosed at 36 I was devastated as well. It took some time to see that while there were things that I had to give up, I found comfort in new things. Do I still have bad days? Yep. Tears and spouts of anger? Absolutely. Bad flares keeping me immobile, yes.
This is what I’ve learned, it’s a whole lot of trial and error to find out what works, and what works for one person may not work for you. So don’t get frustrated if you try and it fails. These are some things to consider trying: gluten free, paleo, compression gloves (not the copper as-seen-on-tv kind) but you can get them at Walgreens or online. They are my saving grace. Soaking hands in Epsom salts and hot water, dark cherry juice concentrate, lemongrass essential oil mixed with some coconut oil-rub it on inflammation. I’m going to be trying cbd drops soon.
There are days where I’ll be on crutches, and then the next day fine. I feel like I look like a crazy person. I’m learning I need to get over that now. Screw everyone else’s judging ways!
As far as doctors go I’m too lazy to find another. He’s okay. He’s kind. He gets annoyed with me for not keeping him posted on my flares. But know this also. It’s incurable. There are not many RA doctors because not too many want to go into a field where they can’t cure you. (Your docs behaviors though are plain wrong)

I’m in a small town in wisconsin. The weather does not help. I’m trying to get myself ready to make a move to a drier state. We shall see.

posted 6 months ago
A myRAteam Member said:

I suggest trying another doctor. Sometimes an internist can be as good as a rheumy. Don' t have to be treated like that.

posted almost 4 years ago
A myRAteam Member said:

So sorry you are going through this in a new place. Everyone is right - your doctor is employed by you. I have seen other people post that they have had bad experiences with rheumatologists, but your was horrible.

On my experience, my doctor didn't diagnose me at my first visit. He did start treating me, but told me he didn't knows well enough to make a diagnosis as there are several autoimmune disorders that are very similar.

Meloxocam does nothing for me. Tylenol does more, just to put that nothing into perspective. Celebrex initially did help with pain. You are going to have to let tour dr know if it isn't working for you. There are alternatives. And patience is a necessity as you try new meds - all can take 6-12 weeks to start working. And fatigue usually lags behind pain in being helped by meds, per my dr.

As far as your work and passion, don't quit yet. Be patient. You may see improvement and be able to get back to it. I decided not to make any decisions about future changes in work until I have eliminated all treatment possibilities.

And it is so hard to not be able to contribute. After working all day I come home and crash on the sofa and take pain meds. I have learned ways to help out. When I am feeling good, I prep meals and freeze them. My house isn't as clean as I would like it, but I have to let that go. I help my girls with their homework on the sofa instead of at the table. Be flexible with yourself. I have learned that it is important to take care of myself for my family. I don't think I have sat on the sofa so much in my entire life as I have in the past 3 years. But, I can only do what I can do! Sending hugs!

posted almost 4 years ago
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