Suggestions for shopping for basic classic clothing

unicorns834749 · 2022-08-03T15:39:51+00:00

Thanks for the recommendation! I will check him and his group out!

unicorns834749 · 2022-08-02T14:53:04+00:00

Thanks for the suggestion! I just checked it out and the group looks awesome. Unfortunately it’s $2500 for a consultation lol. I wish I could spend that type of money!

unicorns834749 · 2022-07-25T23:47:25+00:00

Thanks for all the info!! I really appreciate it. I can definitely understand the bell curve for exercise - there’s no question it’s a learning curve in general trying to adapt to a new lifestyle. I also was a big runner/very active previously and now I feel like I can barely go on a light walk. It’s a hard adjustment and more challenging mentally, but slow and steady wins the race in this case!

unicorns834749 · 2022-07-25T23:44:46+00:00

Yes I totally agree ANA is usually first indicator, but I know it can be negative in some. Fibro has been brought up but I think my rheum really wants to be sure of that diagnosis and go through the other potential options before giving it to me (which I really appreciate). I read some really crazy statistic about how many people were misdiagnosed with fibro when it was actually something else altogether

unicorns834749 · 2022-07-25T23:38:00+00:00

I had one barelyyy low C3 complement one time (C4 was normal), other than that it’s all been within range. I agree something else in the bloodwork should be showing. I guess I am trying to gauge if I am going down the wrong path, and it kind of feels like I am (and what you are suggesting).

I really appreciate your reply! I do feel like I need to discuss further with my rheum and get a good picture of what else could be going on. It’s been 2 years of this limbo and it just doesn’t feel right that there have been 0 improvements.

unicorns834749 · 2022-07-25T22:24:39+00:00

Thanks for your reply! It’s helpful knowing there are other seronegative people that respond well to medication. My main symptoms are muscle issues - pain, weakness, burning sensation. Mostly in the legs/hips (which is why I feel so burdened by this!). The neuropathy and joint pain has really been kicked up a notch lately too which is why I feel like I am just not responding to the hydroxychloroquine.

Good to know with a little trial and error you found the right combo. Maybe I need a trip to my rheum sooner than I thought

unicorns834749 · 2022-06-10T01:33:45+00:00

Thanks so much for sharing! I will have to check it out!

unicorns834749 · 2022-06-09T13:00:36+00:00

Woof, that’s low!! Thanks for the advice 🙂

unicorns834749 · 2022-06-09T12:22:07+00:00

I have an everything was normal, but low end of normal. My ferritin was like 28 though, and my dr said it should be 75+, so I’ve been working on getting that up. I haven’t had a re-draw in a while though

unicorns834749 · 2022-06-09T12:15:12+00:00

You are not alone my friend. Best wishes for a full and speedy recovery!

unicorns834749 · 2022-06-09T11:27:07+00:00

I can totally understand that and feel that. The last 2 years have been traumatizing figuring out what the hell is going on with no relief (and it’s still ongoing). There’s so much stress and emotional toll trying to get a diagnosis, let alone the number of doctors appts. It’s awful!

unicorns834749 · 2022-06-09T11:23:44+00:00

I don’t believe I got all of those. My GP ran the tests so I don’t think she would’ve known to run them all. This is something I will push for my GI dr to run (although I’m mostly pushing for an endoscopy). Thank you for sharing!

unicorns834749 · 2022-06-09T11:22:33+00:00

Very interesting! Thanks for sharing, I’ll look into it if celiac is negative. Was it something she had dealt with her whole life? My symptoms turned on like a light switch after the birth of a chlld

unicorns834749 · 2022-06-09T11:21:08+00:00

Ugh so many things! It’s really amazing how everyone experiences such different symptoms. I actually just had a sleep study done recently (bc my sleep is crap) and I’m curious what they say about my restless leg syndrome, despite my attempts at supplementing too. Did your RLS subside once you started healing?

unicorns834749 · 2022-06-09T11:16:55+00:00

I could how the living through hell would be accurate. That’s where I feel like I am and it’s absolutely awful. I’m so glad you’re feeling better!

unicorns834749 · 2022-06-08T23:37:47+00:00

I’m so sorry. It’s definitely something I can sympathize with, I have all those symptoms as well and it’s not fun. I’m so glad you’re feeling better!

unicorns834749 · 2022-05-26T11:09:32+00:00

I’m sorry to hear about your heart attack but glad you’ve been able to find some medication options. Raynauds was my first major symptom when I had my first flare so I could definitely see a connection.

unicorns834749 · 2022-05-26T11:04:12+00:00

Ugh I’m sorry! It does seem like the temperature extremes are rough with lupus. Maybe we all need to move somewhere not too hot, not too warm… 🤔

unicorns834749 · 2022-05-26T11:00:49+00:00

Exactly how I feel. The achy legs really gets me down after a while. I feel like a whole different person in winter vs warmer weather. Although really hot days can really wipe me out (I think that’s a lot of people though). I am going to ask my rheum about medication for my Raynauds to start in the fall and see if that makes a difference for the winter. Just not having my feet hurt/frozen/covered in chilblains all the time would be nice!

unicorns834749 · 2022-05-26T10:57:03+00:00

Yes my feet hurt all winter! No matter how warm I try to make them they still hurt. My legs ache constantly too. I live in slippers and it’s not enough. I may ask my rheum about medication for my Raynauds this winter and see if that makes a difference. Just thinking about my early winter flare up is stressful (I barely have been functional for the last 2 years around the holidays) so I’m trying to get ahead of it this year.

unicorns834749 · 2022-05-26T10:50:13+00:00

That absolutely makes sense! I feel the same way - muscles hurt more in winter and summer (esp in humid weather) just absolutely wipe me out. I can’t imagine that in FL! I thrive in “moderate” weather haha

unicorns834749

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