Just need to compare notes

General Blog
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Hello, My name is Mimi and I would like to know if some of you suffer the same issues as I do. I was suffering with a lot of pain and I was first diagnosed with Lupus but the numbers were low so my rheumatologist looked for something else in which she pulled a positive for sjogren's syndrome. I also have fibromyalgia and RA. My rheumatologist feels that with the extreme pain and fatigue I feel, it is mostly the fibromyalgia. Everything I do takes so much effort. I work full time and work 45 minutes from where I live. In order to make it through the day, I have to take anywhere from 5 - 6 Norco a day, It is a good day when they work. When I flare bad, my pain starts in my tailbone area and goes up my back into my neck and the pain is amplified and feels like nerve ending pain. On those days I take 6 - 8 which I know is too many but if I don't take them, I wouldn't be able to work and I have to work. I get up to start my day at 4:00. I need to know if there is anyone else that is living this life. I also want to know why there is always so much emphasis put on dry mouth and dry eyes when I don't feel like I am effected so much that way.

Thank You, Mimi

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Dear MIMI,

I can relate to this on many levels, as we have very similar ills, just keep in mind that I am a patient like you, and not a medical professional. I have Psoriatic Arthritis, the Spondylitis type, which means it attacks the spine, Fibromylagia, Sjogren's and Raynauds, along with other complications, which surely you do too, like Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Degenerative Facet Disease, Costochondritis...

I looked over your profile and see that you take Lyrica, but has the dose been increased slowly over time? They start us out on a low dose so that we can adjust, and hopefully avoid any side effects. I take 225 mg 3x daily. I take the NSAID Daypro for joint and bone pain, the max of 1200 mg daily. Those are the major 2 right now as I was taken off Enbrel due to constant UTIs. Need to see an eye Dr before the Rheum will put me on Plaquinil, as my Sjogren's has worsened at an alarming rate since discontinuing the Enbrel. I also have Zanaflex for muscles and I take good pharmaceutical grade vitamins with heavy emphasis on Cal/mag/d3.

My GP prescribes Morphine, but I take it only when I absolutely have to, and I need to take Phenergan an hour before hand so that I do not heave up my toenails!

My Rheumatologist prescribed Ethyl Chloride spray to allow me to be able to ride in the car, but warned it was to be used sparingly, not often. This is an anesthetic like they use to put in pic lines for IV patients, and works fairly well for a 30 minute ride, lasting a few hours.

RA is a nasty one, it's one of the fastest, most destructive diseases out there, as you well know, and I'm sure you suffer greatly. Is there a reason that you on Plaquinil and not Enbrel or Humira? Do you see a Rheumatologist?

I don't know how you are tolerating this kind of work and driving load, it must be very hard on you, my friend. I pushed myself until I could no longer do it! finally I had to listen to what my body was trying to tell me, which was slow down, and take better care of yourself!

My heart goes out to you, I have been in your shoes, I too worked 45 minutes away, and from door to door was 12 hours! It was WAY too much!

I hope you can get to a better place, and are seeing the very best Doctor that you can.

Wishing you well,

SK

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BTW, my Rheumatologist told me that the chronic pain from the PsA most likely caused the fibro, which is mostly muscle pain, but if injury was involved, that can shrink the tendons and cause great bone pain. I find that it's sometimes difficult to tell one from the other, but the bone pain I attribute mainly to arthritis. My Rheum also told me that fibro was the very least of my problems, but it could be different for you since Fibro is a 'stress response'.

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Hi MIMI

We also have a fibro site on Bens Friends You can find it on the right hand side of your page if you would like to join it.

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Just checking in with you Mimi. Wondering how you are.

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Completely agree woth you about the dryness problems. Not my biggest problem neither. It is the neurological pain that kills you. On and on, day and night.
Gave up working some years ago though, sorry that you can’t.
Good luck from the Netherlands.

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Hi baukje,

Good to hear from you!

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Hi from me too,

Who takes Lyrica???

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My biggest problems are severe nerve pain, debilitating fatigue, anxiety, and nausea. The dry mouth and dry eyes do flare up from time to time, but that’s more of a slight aggravation, not a big problem for me either. I have my first Rheumy appointment in October, so I’m not currently on any meds yet. I sure hope there is something that helps with the fatigue and pain without knocking me out or causing anxiety, as lots of meds do. Anyway best of luck to you.