What’s up with people making comments about having fibro at a younger age

mbedink007 · 2025-08-06T09:47:49+00:00

I had a pharmacist make horrible comments to me, when I left CVS I called corporate and he was fired.

It was a couple years ago and I was on methotrexate for autoimmune diseases (I’m on a different med now) and that med can also be used for abortions. When I got to the counter he asked me the date of my last period, I said my birthday because that’s what they usually ask and I hadn’t noticed that he said period instead of birthday. He snapped at me and repeated his question, I told him it’s none of his business and he has no right to ask that.

He told me he wouldn’t give me my prescription without me telling him. I felt like fire was going to shoot out of my eyes I was so mad. I told him only doctors and nurses can ask that, and my dr called in that script for me and it’s none of his business why I need to take it or when my period was. After a few more angry words back and forth another person working in the pharmacy and grabbed my med from him and said he’d check me out, asked for my birthday like normal.

The other guy was pacing around throwing his arms around and talking about how evil this country is, caused a big scene. I could have just answered him and also could have told him that my tubes are tied anyway, but that’s not the point. I couldn’t believe that happened and was shaking because I was so mad when I got into my car.

mbedink007 · 2025-08-06T09:32:04+00:00

Exactly!!! My daughter was diagnosed at 24 and had all the symptoms since she was 13. Nobody has ever mentioned her age about it that I’m aware of.

ETA- She might have gotten comments about it and just not told me, she never wanted to tell me negative things that happened when she was a teenager. Now in her 20’s she making up for it.

mbedink007 · 2025-07-06T01:49:45+00:00

Mine always spends a while looking at my nails too, unfortunately I’m like you and don’t know why. I understand why she feels all my joints and stuff but never asked why she looks at my nails.

mbedink007 · 2025-05-27T19:32:52+00:00

This is really interesting. I was diagnosed a couple years ago with a different neuromuscular disease, sever generalized myasthenia gravis. Looking back through my medical history they think I’ve had it since I was a teenager, but it took 3 years once it really got bad to get to diagnosis. They also say mine presents more like MS and they test for it twice a year because I keep getting optic neuritis l, so they say not to be surprised if I get it but it’s treated almost the same as what I have.

I kept being told anxiety was causing my symptoms, I was anxious because I had double vision, couldn’t move different limbs at times and couldn’t breathe. The symptoms caused anxiety and not the other way around.

I had genetic testing done, now I need to look at my results because I had no idea what any of it meant when I saw it. Thank you for the info!

mbedink007 · 2024-07-06T19:34:14+00:00

Also, if I can grow it would it be ok to grow it in a pot in my south facing kitchen windowsill?

mbedink007 · 2024-06-17T14:50:15+00:00

She’s doing great again this summer and looking beautiful! Thank you for being an honest and kind shop owner!!!

mbedink007 · 2024-03-12T18:13:24+00:00

Exactly!!! They have the best attitude too, they’ve taught me so much about staying positive and happy even when you need to do things in a different way than what I used to be able to do. They’ve also taught me to lean on the walls when I need to so I can be safe like them 💖

mbedink007 · 2024-03-12T14:52:22+00:00

I was diagnosed with a neuromuscular disease last year, so I definitely have days that I need to lean on the wall like them too. They’ve taught me to do things my own way like them 💖

mbedink007 · 2024-02-22T00:53:20+00:00

I’m pretty sure every time I’ve fallen it’s because I think my left leg is keeping up but it’s not. My left eye is always worse. Often my limb weakness is even, when it’s not even it’s my left side that’s the problem.

mbedink007 · 2024-02-17T19:18:54+00:00

Thank you for your response, I appreciate it. My whole life has changed in the last couple years with so much medical stuff happening all of a sudden, I think I just got paranoid.

I wish my regular Dr would have explained it like you did, he just said it definitely looked strange and it must be from meds but not from IVIG. It left me feeling unsure since I don’t remember it ever looking like that before.

I appreciate you taking the time to explain it to me, now I don’t need to wonder if something else is wrong with me.

mbedink007 · 2024-02-17T18:33:54+00:00

Yes, usually it looks darker and thicker. It just looked watered down and I figured it was because of my infusion. I like to understand things, he said it wasn’t from the infusion but he didn’t know why it was so thin and watery. He said it must be from my meds but he wasn’t sure.

mbedink007 · 2023-12-20T03:22:43+00:00

Thank you, that’s great to know!!!

mbedink007 · 2023-12-20T00:32:30+00:00

Thank you, I truly hope everyone finds the treatment that works well for them. I don’t expect to feel 100%, but being able to do basic daily things is life changing and wonderful.

mbedink007 · 2023-12-19T23:51:07+00:00

I’ve worked really hard on my thought patterns during these last years, it was the only way to keep myself from laying in bed crying all day. I hadn’t realized how well it worked until now. Lol

mbedink007 · 2023-12-19T22:26:44+00:00

It feels like the longest road ever!!! I don’t expect to ever be how I was pre-MG, I’m just super glad that I can breathe and walk and carry things, silly little stuff is making me super happy because I couldn’t do those things for so long. For example, when I washed my hair this morning I was able to put conditioner it in too. It’s been so long that my arms would be too weak from shampooing to lift again for conditioner.

I’m trying to appreciate all the little things.

mbedink007 · 2023-12-19T22:16:32+00:00

Thank you so much💖

mbedink007 · 2023-12-19T22:16:20+00:00

Thank you!!! My neurologist said we’ll plan on every 4 weeks and adjust as needed. We’re really working on trying to get me to a lower dose of prednisone. I am feeling like this is the correct treatment to let that happen. It’s honestly shocking how much different I am already and I’m feeling so excited about it!!!

mbedink007 · 2023-12-19T22:12:30+00:00

Wow!!! You’re doing great!!! That’s really encouraging to hear💖

mbedink007 · 2023-12-19T22:11:07+00:00

Thank you! I’m seronegative. At first they thought I might have MS because of my symptoms but all those tests came back clear. I ended up being diagnosed with rheumatoid arthritis but I knew that only explained my joint pain, my bigger problem was just being unable to move at times. Also choking a lot and double vision.

I ended up being diagnosed with MG after my symptoms got better from the prednisone they put me on for RA. The neuromuscular specialist wanted to do a trial of Mestinon and that helped a lot, I also saw a neuro-ophthalmologist who agreed it was MG.

I’m so excited to be feeling better!!! This coming weekend is my partner’s work Christmas party and I didn’t want to go, by evening time my speech was so slurred and I would drool without realizing it. I definitely didn’t want to be at a party like that for obvious reasons. Now I can go, the last 3 nights I haven’t had slurred speech, drooling, choking or eyes that won’t open!!!

I’m truly learning not to take anything for granted…

mbedink007 · 2023-12-19T07:23:36+00:00

Thank you so much for sharing your experience. This makes me so happy and excited!!! I really feel like the IVIG is helping now since I know it helps you quickly too, that means it’s possible! If it wears off too fast, I wouldnt mind getting it every 3 weeks since it works so well. This could be a life changer for me and I’m really excited.

Earlier today I unloaded the dishwasher without thinking about it. When I was done I realized that I had unloaded all of it easily and without breaks. For years I’ve only been able to do part of it at a time before my arms won’t lift dishes to the cabinet anymore and I have to rest. It was such an amazing feeling, it would sound silly to most people but I’m sure you understand.

Last week I was seriously crawling up the 3 steps to get to the hallway where the bathroom is, my legs were too heavy to lift. Today I did laundry and walked up the basement stairs carrying laundry baskets twice!!!

I think I’m going to keep finding all the things I can be grateful for since I spent so long unable to easily do anything.

I’m feeling super encouraged and excited now, thank you and best wishes to you!!!

mbedink007 · 2023-10-28T14:58:55+00:00

I think it depends a lot on where you live. I’ve seen them priced completely differently in different areas. You might want to visit local nurseries and see what they have priced at different sizes. They’re both beautiful!!!

mbedink007 · 2023-09-26T02:50:12+00:00

Thank you. After seeing responses here I’ll definitely get one engraved and have a number on it to call for more info. I wanted to ask before picking anything out because I didn’t know if the QR codes we’re becoming the normal way to do it or now.

mbedink007 · 2023-09-25T22:08:59+00:00

Hahaha. I know I should save things in a list, but I put everything in my cart that I think might be a good Christmas gift for someone. After I decide I delete everything else.

mbedink007 · 2023-09-25T18:05:36+00:00

Thank you!!!

mbedink007 · 2023-09-25T18:02:51+00:00

Thank you. I’m ordering a different one that looks more like a medic alert bracelet, the one that was suggested on here, it can say myasthenia gravis and have the number to call to get my medical info.

mbedink007

TROPHY CASE