re: Fibromyalgia and Chronic Pain Support Thread

Quoting *WishingUponAStar*:" Hello! I am so glad I seen this suffer from severe chronic pain because of fibromyalgia & lupus. ... [snip!] ... down while I have a chance, but thought I would drop in share my story a little and say hi! Hope everyone is doing good today!"

Thank you for sharing your story! I know I've seen you around here quite a bit before. Hopefully you can find some good support here?

I wanted to post this. I LOVE this. There are a lot of days where I want to get far more done then I got done. Where I want to do things but my body wont let me, and I find those are very difficult days.

I'm trying to stay positive, and this is a reminder to me.

Quoting she nan igans:" I wanted to post this. I LOVE this. There are a lot of days where I want to get far more done then ... [snip!] ... but my body wont let me, and I find those are very difficult days. I'm trying to stay positive, and this is a reminder to me."

That's all you can do, and at the end of the day, that's all that matters!

A quick update on my end, I have to see a neurologist soon. I had a reaction to medication that made me have seizures, and they won't to assess to see if there is any damage. My PCP thinks it may have exacerbated my FMS.

Quoting Chroma Hex [+1]:" That's all you can do, and at the end of the day, that's all that matters! A quick update on my end, ... [snip!] ... made me have seizures, and they won't to assess to see if there is any damage. My PCP thinks it may have exacerbated my FMS. "

How scary. I'll be thinking of you!

So I'm so frustrated!

My Dr emailed me on the 20th of last month saying all my test results were good, it was Fibro then, and did my prescription. Well, come to find out I guess on the 26th she ordered an ANA test and a SMITH AND RNP ANTIBODY test. So, 6 days AFTER telling me everything was fine.

I also never got my results for my ANA, I just figured they didn't show up online. So I've been trying to email back and forth and figure out, did they just not run the ANA for some reason, or did it come back out of standard range? I know that both tests are used for auto immune, and the 2nd for lupus specifically.

I'm just stressed. If you're going to order new tests like this you should include WHY, especially when they're done AFTER you've diagnosed me.

So I guess I have to go do these tonight, since my appointment is Monday to discuss Fibro treatment items. No need to do that if it turns out it isn't actually fibro and is instead Lupus.

sigh.

Quoting she nan igans:" So I'm so frustrated! My Dr emailed me on the 20th of last month saying all my test results were good, ... [snip!] ... to discuss Fibro treatment items. No need to do that if it turns out it isn't actually fibro and is instead Lupus. sigh."

My best guess would be that she is confident that it's Fibro, but she wants to make absolutely sure. If you had an auto-immune issue, I think there would have been noticeable differences in your cell counts, which is a basic blood test, right? As for the ANA, it's procedure to check for Lupus when going through an FMS diagnosis. I'm not sure why she didn't do it to begin with. I'm sorry, I know how stressful that has to be. It's hard to put your trust in professionals when they're not acting very professional. =[ Stay on their case or you won't get any answers!

Quoting Chroma Hex [+1]:" My best guess would be that she is confident that it's Fibro, but she wants to make absolutely sure. ... [snip!] ... put your trust in professionals when they're not acting very professional. =[ Stay on their case or you won't get any answers! "

She DID run the ANA, lol. She's running it again I guess, along with another. I finally got answers from her .I guess the ANA was negative, but she wanted to run another just to be sure, and that's also why she added the additional test.

I was frustrated because we'd already done the testing, lol. So it was weird that 6 days AFTER the diagnosis she decided to reorder tests without ever talking to me, you know?

Quoting she nan igans:" She DID run the ANA, lol. She's running it again I guess, along with another. I finally got answers ... [snip!] ... lol. So it was weird that 6 days AFTER the diagnosis she decided to reorder tests without ever talking to me, you know?"

I'm guessing you can read your medical records online? That is really odd. I'm sure she's just going at it according to procedure.

Quoting Chroma Hex [+1]:" I'm guessing you can read your medical records online? That is really odd. I'm sure she's just going at it according to procedure. "

Yeah, I can. I have Kaiser, so all my test results generally pop up. The ANA never did. So when I found out it was reordered, I thought maybe they didn't run it. She said they did, it was negative, but I guess she wants to rerun it just to be sure. I just wish she had added any of this information when she'd ordered it. I got a letter in the mail just telling me to go to the lab, haha. If they do that, especially a week AFTER hearing everything is good and here's our treatment plan, they should include what htey're testing for and why, you know? Instead of ordering something out of no where.

Oh well. I think it just frustrated me because it could have been so easy to do it in a way that doesn't stress out a patient.

I'll go tonight and do the test, and Monday I have my appointment to discuss treatment options, since the muscle relaxers just aren't cutting it. Today I went to the park with the kids and my oldests Teacher and I for SURE overdid it. I'd worked out at home a bit because I didn't expect to go today, but the teacher wanted to and I feel stupid saying no.

I hurt SO MUCH now. My knees and shoulders/arm area are killing me, and for some reason my ribs in the front are aching really bad too. But I didn't want to be like "we need to go home." I hate this some days, because I feel like I should just suck it up. she wants to go out tomorrow too, but it's so hard because i have to chase after the 18 month old and carry him and all of that, and I don't know if I can do that tomorrow.

sigh. I can't wait to try something for treatment.

Quoting she nan igans:" Yeah, I can. I have Kaiser, so all my test results generally pop up. The ANA never did. So when I found ... [snip!] ... and carry him and all of that, and I don't know if I can do that tomorrow. sigh. I can't wait to try something for treatment."

I know how you feel. =[ I work myself too hard most days just from the fact that my friends are my age. They get that I'm in pain, but they don't understand that it builds and builds, and that it's not a mind over matter thing a lot of times. I mean, it's technically all in my head, I can't just will it away, ya know? Like, right now they're begging me to come over and watch this movie, and I know I'm going to go, I'm just having the hardest time getting up and around and ready, I just gave Addie a bath so being on the floor kind of made my legs worse.

Part of me is REALLY glad they don't understand what I'm going through, but I wish they were a little empathetic sometimes. It would help if I actually sat them down and said "Hey, this is going on, I can't help it, yu guys need to chill if I ask you to chill." but I don't want them to think I'm broken.

It doesn't help that my closest friends are guys either. Sigh.

I LOVE walking...the temp dropped a lot here, and I love brisk fall weather. I've been walking a lot more, but that combined with the weather hasn't really been great for me. I'm trying to push myself through it because I REALLY need to get into better shape, but I feel like it's one step forward two steps back.

Quoting Chroma Hex [+1]:" I know how you feel. =[ I work myself too hard most days just from the fact that my friends are my age. ... [snip!] ... push myself through it because I REALLY need to get into better shape, but I feel like it's one step forward two steps back. "

I'm really afraid to exercise too much. I took up running about 6 weeks, maybe 2 months ago, and that's when it all went to hell. Before that I had pain, but it wasn't that bad, and it wasn't every day. After running for about 3 weeks though, I just had a horrible flair. That's when I went to the Dr (well, after giving it another few weeks to get better). It didn't really. It got a little better, but it's WAY worse then it was before I took up running.

So now I'm so afraid of overdoing it and getting worse. I still lift weights, but only a little bit (MUCH less then I'd worked up to), and I try to do steps and stairs, but it isn't nearly as much as before. And taking a walk I enjoy, but the park and stuff involves hauling around my 30lb 18 month old, and THATS I think what kills me. And I end up jogging and running a bunch to chase him around.

I hate it because family/friends are one thing, but this woman is a teacher. She isn't family. I don't really want to have to explain to her why I can't do it, you know?

Quoting ILOVEWINE:" <blockquote><b>Quoting *WishingUponAStar*:</b>" Hello! I am so glad I seen this suffer ... [snip!] ... everyone is doing good today!"</blockquote> Wow! I'm sorry that sounds terrible. What did they put you on for fibro?"

Eh, I have been on soo many different meds. I am on vitamin d, iron pills, multivitamins, narcotic pain reliviers, muscle relaxors, & non narcotic pain meds. Those are just the pills I have that I sometimes take. I hated taking meds. I hate the side effects, so a lot of the times I don't take them. Not that they have ever helped very well when I have taken them though.

Quoting Chroma Hex [+1]:" I know what you're saying, honey. No one would ever wish this kind of life on their worst enemy, but ... [snip!] ... you ever need anyone to talk to, feel free to message me, okay? I'm so sorry to hear that you're going through all of that. =["

Thank you hun! Yea I don't know anything about FMS. What does the initials stand for? Yea my uncle has Lupus, but we don't really talk. Plus it is more common in women, and there are a lot of problems that he can't really talk to me about.

Quoting *WishingUponAStar*:" Thank you hun! Yea I don't know anything about FMS. What does the initials stand for? Yea my uncle has ... [snip!] ... we don't really talk. Plus it is more common in women, and there are a lot of problems that he can't really talk to me about."

Fibromyalgia.

Quoting she nan igans:" She DID run the ANA, lol. She's running it again I guess, along with another. I finally got answers ... [snip!] ... lol. So it was weird that 6 days AFTER the diagnosis she decided to reorder tests without ever talking to me, you know?"

My first ANA test was positve, but since then they have done a few ANA tests and some were high, on the low side of positve, & completely normal. ( Thinking I was in remission when I got the normal ANA, but I think I am coming out of remission or something.   )
I know sometimes it can take years for auto immune diseases to even show up on an ANA though. My doctor said he had a women who you could clearly see had severe arthritis in her hands, & it took 10 years before it actually showed up on an ANA.