u/RippleRufferz

So I have one pair of bioflect leggings and otherwise only have a few compression socks. I really need something for my arms, but I’m unsure of what a good option would be. I see that bioflect has long sleeve compression. I’m curious if anyone has another brand/type they like that’s at least getting the upper arms. I’m not certain if they need to be graduated compression or not (I noticed bioflect didn’t mention this and now I’m wondering if the leggings even are 🫠.)

I’m really in a conundrum of both space in the house and money. I haven’t been able to do cardio and need to start with a recumbent bike, but I am stuck on how to problem solve this.

Has anyone used one of the $40ish dollar desk bicycle pedals for home and managed to prop it against something so it won’t slide and recline back on the floor to recreate a recumbent bike?

Gyms are out right now because my health is so rough that’s a big ask, plus I’m the primary caregiver for my two younger special needs kids. A recumbent bike is more expensive and takes up space- at least the ones that are supine enough for me (a lot of “recumbent” exercise bikes are just so upright but someone can just recline their back a bit, which is not at all what I can do.)

My 5yo daughter is a carrier of Duchenne’s muscular dystrophy. Her neuromuscular doctor thankfully thinks her not be manifesting with muscle wasting etc. However she has dealt with significant symptoms related to dystrophinopathy for a long time. She has muscles weaker than the other (especially in the legs and fine motor) and deals with muscle cramping and pain that can be quite mild, but also flare very badly (last year she couldn’t walk one day and it took 4 days to return to normal.)

Now she’s in another flare. Her GI has slowed down with it so we’re dealing with constipation, but her legs/calves are noticeably impacted. She has a lot of pain, then trouble walking, and is falling repeatedly from it :(.

I’m really unsure what to do during these flares. What do you do when it gets bad?

They had previously trialed her on dantrolene, but I couldn’t tell them if there was significant improvement or not. It’s hard to say she’s so young. They say it’s not a PRN medication, but I have to wonder if it is.

I normally give her 100mg of magnesium bisglycinate at night. I don’t know what else to do beyond massage and extremely gentle stretching of her calves if she lets me (usually I get like 3-5 seconds max with her.)

UPDATE: I got the report and it’s missing SO much information. I’ll try to add the censored screenshot in the comments since I have no option to add a photo on here. My rheumatologist’s MA got me in this Monday. So I can show my rheum this abysmal information and hopefully she can request either someone specialized in salivary gland biopsies at this place review it or just sends it to our local hospital pathology to review it.

———

I’m so defeated. My salivary gland biopsy came back negative. I don’t know the details because I don’t have a rheumatologist appointment for a couple weeks. I feel like I’m never going to find out what’s wrong with me and I’m so baffled when it fits Sjorgen’s so well.

I’ve always had dry eyes and mouth (submandibular swelling from clogs and the salivary glands in my cheeks get clogged.) I have to take pilocarpine.

I was diagnosed with small fiber neuropathy recently.

I have awful awful inflammation, pain, body aches in spite of being on oral steroids for secondary adrenal insufficiency and even being on zepbound.

I have hEDS and dysautonomia and doctors really love to just shrug and attribute everything to me having hEDS. But I’ve pushed them and later found things like the small fiber neuropathy, seizure disorder from focal cortical dysplasia type 2, microvascular dysfunction, etc.

I have awful brain fog, terrible fatigue, body aches, global GI dysmotility, etc. My joint pain has always been so awful.

Am I really just absolutely wrong about Sjorgen’s? I don’t know what to do. If I’m nearing 41 and it’s not showing on a lip biopsy, is that pretty definitive it’s not Sjorgen’s, or is that not how the diagnostic process works?

I’m not asking if I have it because I know no one can answer that here, but I’m just wondering if there’s anything else I should be aware of about everything considering all the things being learned about Sjorgen’s.

I was hopeful to avoid it, but my rheumatologist (very nice and knowledgeable) said it’s still the gold standard. Plus she was curious about another similar condition given my bloodwork involving inflammation of free kappa light chains and alpha globulins (likely not cancer according to the blood oncologist.) This was all bloodwork done in trying to figure out what’s causing my biopsy-confirmed small fiber neuropathy.

Naturally I’ve had negative bloodwork since my 20s when I suspected I had it (especially after a swollen submandibular gland landed me in the ER.)

Anyway she warned me it was rough and I’m just slammed 🫠. The ENT routinely does these and I had thought it would be a consult first but nope he just did it right there after seeing basically none of the glands in my mouth were producing saliva when he tried to stimulate it. I’m not a fan of how the only aftercare instructions he gave were alternating Tylenol and ibuprofen, eat soft foods, ice packs, don’t swish just let water fall out of the mouth. I had to look up the rest like elevating my head at night and no straws (figured that one) or acidic foods etc.

Did anything else help you get through the recovery time? I’m not really talking/doing facial expressions for probably the next three days.

I received an email from my husband with a paperless invite. I clicked on the link and entered the passcode. Then it told me to log in a different way, which made me stop because that seemed scammy.

I asked my husband and he said he had clicked the link last night from a friend, but says he didn’t do any further sign in. So all he did was click the link like I did. I changed my Gmail password, but what else would I need to do?

I normally never fall for these and am so frustrated especially since I didn’t do any additional sign ins.

Is it always a vascular or lipedema specialist for a diagnosis? Is there anyone else that people have received the diagnosis from? It seems so difficult to find and pay for these specialist appointments.