New Here! - Help please

General
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I have Sjogrens along with my Fibromyalgia, and I think I have been SO focused on my Sjogrens that I haven’t taken care of me in regards to my Fibro. This week it has slapped me in the face. I have been in so much pain, and it isn’t anything new. I’ve just been blaming the Sjogrens, but it’s the FIBRO!!! I feel really alone because friends seem to gradually disappear when things get rough for me. I’m frustrated with doctors because they don’t listen. Tramadol sucks in my opinion because it doesn’t even touch my pain. I feel like these two health problems are controlling my entire life, and I hate it. It is all I can do to get through work, and I stay in fear of losing my job. My friends advice just frustrates me because they do NOT get it. I’m sorry for just rambling, but I needed to get that off my chest. This whole week has been a nightmare for me, and not one of my friends has been to check on me or call. As soon as they know I am having a flare or not feeling good, POOF their gone! Sorry again for the rant! Open for suggestions, advice, encouraging words, etc.

Sonya

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Hi kayrn

I tend to blame the fibro for every thing and not the lupus and sjogrens. Can you take leave from work or go out on short term disability? One of the things i did was take a day or two off instead of enough time to feel better. I take lavender baths and they seem to help and water therapy was great. Some times friends dont no what to say or do so they disappear till things are better. You are not a lone and i look forward to seeing you on both sites

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Hey! I am a member of the Sjogrens group as well, and SK and I talk pretty often. I do have Tizanidine to take when I need it. Otherwise, I take ibuprofen or Aleve. And I don’t think your whacky…did you read my rant?..I sound whacky!! I don’t think any of my friends would take the time to join the site, and I know I need to accept that they just aren’t able to understand what I live with everyday. I am definitely interested in knowing what vitamins you take. Thank you for your kind words!

4

I do take Gabapentin for nerve damage, and it helps the pain some. I probably need to be on a higher dose for it to help more with my pain. There are times that I wish I didn’t have to work! Taking care of your health seems like a full time job. I have no energy or desire to get any exercise after working all day, and that is not good! Thank you for your kind words!

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Hello sweet Karyn!

I am relatively new to this site and let me assure you…everyone here does not mind your rant one little bit. We are here to lift up, hold, encourage and even poke a little fun at each other and ourselves.

I have Fibro, raynaud’s, celiac disease, on Coumadin for life, scoliosis (mild), lichen planus, and bulging discs in my neck. Geez, I wonder if someone could write a country song about me? LoL

As for the Sjogrens…have you gone to your dentist about that? My dentist keeps up with me wonderfully about the LP and watches my mouth like a hawk. Just a thought…

Wishing you a better day today my fellow spoonie.

Gentle hugs and blessings,
Bevie
xoxoxoxo

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Hey Bevie,

I too have thought about the whole country song thing! LOL. Yes, I have been to the dentist. I actually go to the dentist this week. I am kind of dreading it because I think I have a cavity. I feel like I can’t brush my teeth enough.

I have TMJ, chronic migraines, depression/anxiety, severe GERD, and a few other things thrown in there. I’m just a hot mess! Thanks for your kind words, and I hope to be a support to others. So, if you ever need someone to talk to, I’m here!

Gentle hugs and pain free days,
Sonya

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Hi Sonya and welcome! I'm so sorry about your awful week. When it rains, it pours.

I would think that it would be hard to tell which illness is causing what, when you have multiple diagnosis! And I'm not sure how you could tell one from the other but it might be helpful to read our posts and see if what we are saying applies to you and then figure that it's possibly/probably your fibro flaring up.

Friends disappear because they honestly CAN NOT understand what we are going through or why we cancel out on them. It's almost beyond the realm of being human to understand the symptoms of fibro if you've never had it. I find that I have to repeat myself with family so they understand what's going on.

BUT that doesn't mean that you are friendless or cannot find new friends. You can start right here and right now. I'll be happy to be your friend. I understand your suffering and am willing to listen and maybe give some advice. Or maybe just listen, if the day and pain calls for it.

If Tramadol isn't doing it for you, can you go back to the doctor and request something else? I'm on Lyrica, which is made for nerve pain, which fibro causes. It helps to take the edge off the pain. Maybe your medicine is helping more than you realize. i mentioned elsewhere that whenever I forget to take the Lyrica (not very often anymore!) I'm in really bad pain and it lasts for a day or more. At any rate, i strongly suggest that you see your doctor. He or she should try things on you so that you can find that something that helps with the pain.

Have you looked into disability? You can only make like $1,100 a month in order to be eligible but you can work up until that point. i know that it's scary to contemplate making that decision to file for it but it sounds like you are getting near the point where you'll pop at work. The other thing would be if you could find something more helpful medically so you could keep on doing your job. The problem is that the pain gets in the way, the fatigue gets in the way and the inability to think clearly gets in the way. And once you get to a certain point, you just can't do it anymore.

Please keep coming. We are here for you, ready to listen and offer support. You need both of those things very much right now, as fibro is so complex to understand and to have others understand. Some people use this article to explain our illness to others, as well as to learn to pace themselves: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Go easy on yourself. Be gentle. You aren't failing at things; a medical, mysterious, barnacle has attached itself to you.

But we are here!

Hugs,

Petunia