Once again, thank you all so much. I probably would have just went along with whatever diagnosis, if not for all of your collective advice. This is the only place I can really go to for understanding; People who have been through this first hand. Some family members understand, kind of, but when some family members heard the "Fibromyalgia" thing, they said... "Oh, that's caused by depression. You'll be fine, you just need to see a psychologist". What?! I can understand why people diagnosed with that get really pissed off at people saying it's all in their head or a fake illness or whatever.
Anyway...
I was given two steroid injections (one that takes immediate effect & one that's long lasting) two weeks ago on my first visit. The pain in my fingers/hands went away a lot (for the most part) within several hours (I should have mentioned that before), but I still couldn't stand up for very long at all & there was a lot of pain still in my larger joints (such as my knees, lower back). I will say that I did feel much better overall, although I know steroids have that general affect? The weakness was still definitely there in heaps, but surely not as bad. Fatigue was unaffected and still huge. I'd say what relief I experienced lasted for about a week. Now that I think back, I'm surprised the rheumatologist didn't even ask about the injections this visit (like if they helped?) or tell me the side effects before I was injected 2 weeks ago (of which I actually had a few, physically and emotionally, and is why I didn't ask for more before I left - I was contemplating it). All that was said by the nurse was, "Sometimes people feel a little weird in the spot where they're injected".
I mentioned again that I was worried about my hands, being a guitarist, so the doctor ordered an X-ray of my hands... Not sure of the results.
The pain/fatigue are truly unbearable right now... Really bad. I need something for the pain; I can't simply wait for them to start testing me on different medications to see what works or what doesn't. How long until they "get it right"? They said they'll call me, but I have no idea when or for what... A day? Three weeks? I think I'll make a phone call to ask for another injection or at least some kind of pain relief... Ugh, it being Friday evening, that might be hard over the weekend except for going to the ER? And I think you guys are right about going for a second opinion. Thanks again to all of you!
Since the rheumatologist hasn't followed up since last visit, I went searching for a good doctor/diagnostician & found one. He doesn't think its Fibro - He thinks it's psoriatic arthritis or some other inflammatory arthritis & started me on prednisone & some NSAIDs... I believe an official diagnosis will be coming. The neurologist set me up with a "doctor of natural medicine" who also put me on vicodin. I had an MRI yesterday of my lower back/spine & I'm off to see another doctor in a couple hours...
Another issue, perhaps someone has experience with this: At the start of this post when I said I quit my job - Actually I was put on medical leave (said quit because I told them I can't work any more in my physical condition)... One doctor still hasn't given me a note I asked for, and because I was in such horrible shape this past week(s), all I could do was just lay in bed... Truly incapacitated, so much so that I didn't even have the strength to check phone or e-mail (at the time I was on no pain/prescription meds). Before I could check my phone's voicemail, I received a letter in the mail (2 days ago) from work (my family handed it to me) saying that I was fired for not getting a doctors note to them... But I DID tell them that it was on its way... I told them I was just too physically incapacitated to give it to them at the time and I was waiting for the doctor to send it (which he still never has) - I'm concerned that they were trying to fire me before I could go on short term disability. I'm really ignorant about this stuff, since I've never had to go on medical leave before. My doctor is saying it's crucial for me to be on short term disability right now and to call their human resource department right away - He said he was upset the other doctors didn't tell me to do that. I wrote my manager an e-mail, no response. Waiting to hear back from the human resource department... No call back either, yet. I'll just keep calling, I guess. Still in such pain I can barely walk/stand... Blah, blah, you all know how it is.
Please excuse if my thoughts seem jumbled... Although the prednisone & vicodin help the pain a bit, they put my head in the clouds... Thank you for listening and for advice. I'm concerned about this job stuff - I'm physically unable to work, obviously, which means no income... And I cannot afford my insurance to die on me - Although the insurance company told me it's good until December?
I too had nothing show up in the blood and urine tests. My bone scan was a wreck though...initially I was told I had 10+ fractures and multiple joints that showed serious degenerative issues. Thankfully my wife is the one who has the insurance in the family. I would definitely get in touch with HR at your work. Unfortunately I don't have any other advice as my solution was to leave my job and become a stay at home, homeschooling dad. Best of luck, keep us posted.
I to was told I had fibro for years and I do but I have Psa and it is primary to the fibro. But it took a major move that required finding new and much better docs (thanking the good Lord everyday for that). I don’t know about a lot of people but when you combine a young seemly healthy person with normal blood work, and that doesn’t typically have a flare when going to a doctors appt. health care professionals don’t even entertain the thought of any type of arthritis. I started journaling my signs and symptoms and taking pictures of anything I could, usually skin involvement. Also taking along my spouse and my adult children, so they could share what they saw. Your Dad could help in that capacity. Mine was a rheumy looking at the big picture, MRIs with serious degenerative issues in the spine and other places, skin, nail, and history. You will need to have very good records through the doc(s) if you need to file for disability, it’s difficult at best when the Dx is ambiguous. and fibro is (it seems to be the go to when they don’t know) and with your young age it will be difficult for a quick approval, not saying to scare you but to prepare you. I filed over 2 yrs ago and waiting for hearing date Good luck with your journey, just remember on the worst days, there will be a better one soon and the flare will pass. Keep your head up!
Wow! I just read your story and you have really been through it! I don’t have any solid advice to give you regarding your job situation; it sounds complicated. If you are not getting any response by email or phone, you could physically go to the HR department. Is there a policy stating when you have to provide documentation? That would be good to have. Of course, you could always get an attorney. It does seem a little funny that they would fire you suddenly when you became ill. At the very least, you can sue them for unemployment. Anyhoo, those are just some thoughts.
At least, on the health care front, you are getting some good care. I really empathize with everything you have been going through. I had a doc try to give me a fibro diagnosis too at one point. I fired her. it is good to hear that the new doc is really looking into the cause of all of your symptoms. You may have found a keeper!
I document my symptoms too. There are several apps for the iPhone that you can use. I rate my function every day, my response to medications, describe and photograph my visible symptoms, rate my strength in terms of function ( such as: “Today I am unable to open bottles or soda cans”, or “Needed shower chair to bathe safely”), keep track of the amount and quality of my sleep, and my energy level for the day. Like I mentioned before, there are apps for this that make it so much easier to track. Plus you can print your results to show to the doc. My primary doc has found this incredibly useful to track my progress. Also, I tend to have weird physical symptoms that are ALWAYS gone by the time I get to my appointment, so this way I have something to show the doc instead of trying to explain it. One app is MyRA and the other is MyPainDiary. I haven’t tried the second one yet, but MyRA is free and pretty cool to use.
Good luck with your journey, just remember on the worst days, there will be a better one soon and the flare will pass. Keep your head up!
it is good to hear that the new doc is really looking into the cause of all of your symptoms. You may have found a keeper!