Hello All!

So many developments, mostly positive, some annoying, some downright ridiculous! Thought I was having a flare so went to the ER on 12/5/15. Was given a prednisilone infusion, some more protonix for my gastritis (which is awful after 5 months of steroids) and pain relief. Was in and out in 3 hours and to get in touch with my opthomologist, rheumy and pcp as soon as possible. Saw eye doc on Wednesday and he believes all my blurry vision, watery/dry eyes etc. is from the pred. PCP called me and asked me which antibiotic I was given for the sinus infection they saw on the CT scan and I said I wasn't given any antibiotic. Didn't know I had a sinus infection, but had been given dilautid for pain so I was pretty out of it. So given amoxycillin for 10 days. Rheumy's office set up an appointment for Thurs, so went to see him, and he told me that he is sure that it is my fibromyalgia causing the pain I have because my sed rate was 7 in the ER (YAY!). My son took me over to this appointment and the doc was awesome explaining the illnesses to him, so happy I switched to this guy. Oh, and found out that the previous 'rheumy' isn't one at all but the other dr in the practice is. He was an internist specializing in allergies!

So that's all positive. Here's the negative, the not-rheumy sent in a note after my post hospital visit in October stating that with the methotrexate he hoped for a big improvement and I would be able to return to work, so my disability benefit has been suspended as of 12/15.....Uhhhh.....WHAT???? He never discussed it with me, and when he wrote the note we hadn't even started the treatment so how can they suspend benefits???? There's no guarantee it would work, and in fact it didn't, my new doc took me off ir because the side effects were bad. So now my new docs who don't really know my case very well are trying to help, I'm having to make multiple phone calls to keep things moving OH and all the paperwork from the disability company was mailed (old fashioned mail) so with the holidays who knows how long this will take. Actually got this taken care of pretty much, went online and downloaded forms and emailed/faxed to doctors.

Also, I don't have a job to return to, I was terminated 10/10 so how am I supposed to 'return to work'? I have been toying with the idea of being a health care advocate and I'm going to give it a go and start my own business. Be a good way to control my work load to accommodate my needs and I move forward with this new life of mine. Not to mention I have learned just how difficult it is to get the care we need these past 5 months.

I think this turned into a vent....sorry all!! I am actually quite positive now, I am excited at the prospect of starting my own business. And I am excited to start physical therapy to try and get moving again. I am already feeling better physically not being on the methotrexate, and with rheumy's plan to "aggressively" pursue reducing the pred since my sed rate is good. I am working hard to beat the depression/anxiety back into submission. Doing things I enjoy, crafts, reading, networking with people and getting out at as much as possible goes a long way. I found a therapist who is wonderful and I am applying for a financial aid membership at the local YMCA so I can go in the pool and move.

Warm regards from the USA!!

5 Replies

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  • Well a mixed bag there, PamelAnne! If you are someone who had raised markers of inflammation at diagnosis, then hopefully the new rheumy is correct in his assumption that it is fibromyalgia causing your pain due to your sed rate being 7. The results can sometimes lag behind the symptoms though so do ensure you have continuous repeats of the blood test - by the way, the CRP test is often considered to be the more reliable marker of inflammation than the ESR. Well done on the positivity side though in spite of everything, and lots of good luck wishes for your new business venture.

  • Hi Celtic! Have standing orders for bloods every 2 weeks. Thanks for your response.

  • As Celtic says - quite a mixed bag!

    And as she says - was your sed rate elevated before? Because my sed rate is 4, has never been above 7 EVER, even when I couldn't move pre-pred. If it was elevated, it is very rare to find it elevated in fibro since there is no inflammation - and of course it is low if you are on pred. However - let's hope it stays that way.

    Your non-rheumy sounds a bit of a numpty though! You don't predict the results of drugs - they don't always work!

    And good luck with the new attempt at work - it'll be the best boss you'll ever have! I speak from experience there!

  • ESR was 67 in June and 49 in October. Hopefully the new treatment plan works as I hope!

  • Which makes it sound like PMR before at least - so let's hope it stays away as you reduce. I hope he's going to keep an eye on your sed rate as you reduce just in case it starts to creep up. Good luck!

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