Getting Started

Hi :) I am new to this site as well as to the diagnosis. I am thankful to have some place to turn and people to lean on who understands where I am coming from and what I am going through.

This has been a confusing road to travel and along the way I have been diagnosed with IBS, Depression, Anxiety, and Hypothyroidism. I've suffered 3 pregnancy losses as well. In February 2014 I started getting "flares" in my shoulder/neck which led to the discovery of a herniated disk (C4/C5) and bulging disk (C5/C6). It also led to discovery of a high RA Factor which brought me to the Rheumatologist. After 16 tubes of blood, several x-rays and much poking and prodding she diagnosed RA and Fibro, which brings me here today.

I have so many questions and so much confusion. It is overwhelming and I seriously don't know where to start. I think for many years I have just avoided the situation entirely because there are just too many things going on and I felt like I must be a hypochondriac because like realistically who has this many things that hurt? When I have brought myself to complain most docs just think I am after pain meds and brush me off. I've been prescribed PT more times than I can count, and guess what - it hasn't helped yet. The pain meds (oxycodene, hydrocodene) don't really help either, not when I am having a bad "flare" - sometimes I swear they actually make the pain worse.

So now that I have a legitimate diagnosis, I guess my first question is "Where to Start". My doc and I have touched over the basics - pain points and aches but does she really want a complete list or will it just make me seem like a nut job and scare her off?

I have an appointment in a few hours to discuss the fact that I cannot even blink because the skin on the left side of my face hurts to touch, my left wrist is swollen the size of a baseball and I cannot bend my right elbow without pain shooting down to my finger tips. Now see even typing that makes me feel like I must be making it all up. Should I only complain about the things I can relate to Fibro/RA? Do I let her know how I really feel and what really hurts?

Anyway sorry for the rambling but that is how I feel most days lately - a jumbled mess of "symptoms".

Welcome, welcome!!!

Tell your MD that you are afraid of being seen as a hypochondriac, the more truthful you are the better your MD can help you. Mention this place as a reference for her. I tend to keep things to myself & see if I still have this "new" pain for 2wks of which MY MD wagged his finger at me the last time (I had a septic bladder infection).

M

Defiantly let your doctor know of all symptoms, just in case this might be something else. I hope I replied in time. You do not want to go misdiagnosed as fibromyalgia symptoms can be similar to other things.

Thanks everyone for the welcome and quick reply.

I was able to see the doctor and she is certain that all the pain I am having right now is due to an RA flare. Unfortunately she doesn't want me on the methotrexate until my hubby has his vasectomy, because of birth defect risks - she also wants me to have the flu/pneumonia shot first.

So for now it is a Prenisone pak - I hope this works quickly to reduce the swelling and pain. I honestly feel a little dejected because I felt like all she did was yell at me for not having a Birth Control plan in place and not having my vaccinations done. I only saw her two weeks ago and am scheduled for the vaccinations on Wednesday - but we were waiting for colder weather when Hubbys business slows down to schedule his vasectomy. Guess we are going to have to fast track that now as well.

I am not used to feeling this helpless and out of control. It doesn't help that my pain prescription is almost empty and when I called to refill it (it has 3 refills left) they told me I have to call my doctor and get a new written prescription because of new state laws. Grrrr. She didn't even mention pain meds and I didn't ask because I thought I was good - although I admit these ones often just make the pain worse so I guess it really doesn't matter. I'll talk to my physician when I go in Wednesday for my shots.

Hi Mommybug and welcome! I am glad you were able to get something today from your doctor which will hopefully help with the RA pain, that doesn't sound fun at all. I am sorry you felt like your doctor was lecturing you, it is never fun to feel that. It is so important to have a good relationship with your doctor and to feel like they listen to you. A while back, I started getting the feeling my doctor wasn't listening. Even though it was super scary for me, I told him that and why I felt that way. Since then, it was been so much better and I do believe he hears me now better. I also agree with the others, it is a good idea to be upfront and honest about symptoms. I have kept a pain diary and jotted down everything as best as I could to help me remember and communicate that to my doctor. Anyway, I sure hope the pain level reduces for you soon. I can't take hydrocodone as I never found any benefit (even on non fibro related pain, like dental procedure) but worse than that, it makes me really jumpy and unable to sleep. Hugs!

When I first was dx back in 2009 I started journaling and it helped w remembering all the diff meds you tried and their side effects, diff dr appts and such. Now it’s 5 burs later and I’m still referring back or making copies for new drs! :wink: good luck :wink:

I love the idea of the journal. Everything changes so quickly it really is hard to keep track of everything. I guess that is also why it seems so "unbelievable" - even to me and I am going through it real time.

I've spent the last 8 months trying to figure out what helps, what makes it worse - but find each flare reacts differently. The one consistent thing seems to be that it gets worse when I am inactive - however it is often hard to push myself to be active when I am in so much pain :(

So I started my journal yesterday and hopefully it will help me identify some of these things and maybe even make me more aware when a flare is coming on.