u/Immediate_Assist_256

I was diagnosed by specialist musculoskeletal dr with TOS with both arteries and veins affected bilaterally on ultrasound during movement.

My GP sent a referral to vascular clinic for further investigation and or treatment it got rejected
Saying “there was not enough information on referral”

What other information could they possibly want?

I’m going to call them tomorrow when I’m back home, as I’m out of town right now, but it’s just annoying that I have to follow this up

I have recently been diagnosed with both venous and arterial tos. Pretty sure I have nerve compression also.

I am waiting on vascular specialist and results of a cervical/thoracic CT from the other day for further instructions on how to deal with this.

But I just tried to help my husband and I can officially add peeling potatoes to my too hard basket.

Things I can’t do:
Vacuuming triggers pain and cramps

I can’t brush/wash/straighten or do anything with my hair for a long time, and I’ve given up on shaving my legs

Carrying shopping bags

Scrubbing anything at all for more than a few seconds

Hanging out washing or getting it off the line

Intimacy of the HJ variety is nearly impossible as my arms just seize up and cramp

Is this common for people to experience issues with these things?

Is this a regular occurrence for most of you?

Ongoing fasciculations on random body parts.
Sometimes lasting 15-20 minutes.
Sometimes coming and going a dozen times in the course of a day in the same body part.

I had an eyelid spasm that went on several times a day several weeks recently.

I have hemifacial spasms except it isn’t hemifacial, it’s bilateral.

Is this ALL just fibro related? (I’m recently diagnosed) or is it possibly something more neuro etc?

Does anyone else experience weakness/cramping of the arms/hands/fingers when doing things?

For me it is writing, scrubbing, holding up heavy objects.

I’ve also just been diagnosed with vtos and atos too so not sure how much comes from that.

Diagnosed a couple months ago with fibro after years of suffering.

Last year I hurt my back at work, have a couple of bulging lumbar discs.

Spent 10 months doing rehab physio and lighter duties (I work in healthcare).

Been back working regular since Feb this year.

I saw my fibro dr a couple weeks ago and he started me on a low dose of pred for inflammation.

I told my husband TODAY that my body is finally feeling better 10 days on the pred.

And then I went to work and my back has gone again.

Sudden unexpected stabbing pains, sciatica, periods of unable to weight bearing on my left leg.

This is exactly where I was in early 2025 when I hurt it at work the first time. Except this time I literally did nothing other than shift my body weight from one foot to another.

I’m so upset.

Still trying to figure out if connective tissue plays a role in all my ailments, I suspect heds or hsd, but nothing there is official yet.

It seems every time my body feels like it is moving well, bam! Something goes wrong.

Like when I was at a gym prior to my back injury and doing strength training and then my shoulder went. And then my ankle. And my big toe joint. Etc etc.

So normally my migraines develop over the day or I wake up with pain in the morning.

This week already I had a 2 day migraine with nausea, visual disturbances, dizziness, the works.

It’s been a couple days since then. I have felt fine today. No pain in my head whatsoever.

I spent about 15 mins in a head forward posture flicking thru airbnbs on my iPad.

I sat back up straight and instantly have migraine + nausea.

This has never happened to me that way before. What could this mean?

I went to a special dr for a fibromyalgia diagnosis.

After one visit he’s sent me for an ultrasound with suspected TOS.

I had the scan and today saw the dr again . And it was noted I have bilateral dynamic occlusion of both the veins AND arteries when raising my arms.

Next step is CT of the neck/chest area to see if there’s structural issue such as cervical ribs and referral to vascular clinic.

I have struggled with this issue my whole life so structural wouldn’t surprise me. My mum even mentioned last week about how she used to get mad I didn’t brush my long hair well as a young kid and it got matted and had to be cut off.

I also have always struggled with carrying shopping, and getting washing on and off the clothes line. Since childhood!

Couldn’t do it because it HURT!

I am very thankful for some form of validation.

Has anyone taken stemetil (prochlorperazine) with ldn and is it safe to do so?

Got a shocking migraine with intense nausea.
The only thing I have on hand is stemetil.

Google said yes it was okay and then said no it’s not because of severe CNS depression.

Any advice

Anyone else here got thoracic outlet syndrome?

My fibro dr said he suspected it when we met the other week, and sent me to a colleague for an ultrasound.

The ultrasound guy told me today that there’s definitely a “blockage” of some sort in the central vessels.

This potentially explains a lot re: upper limb pains, tingling, heaviness when lifting my arms etc.

I have to wait about 10-11 days til my next specialist appt to find out where to go with this info.

But I’m excited to have another tangible reason for some of the symptoms I have. And not just everything being “in your head”.

I’m so tired of this.
I can’t afford to work less. I only work 3 days a week on average. And I can’t even do that most of the time.

I have 0 hours of sick leave and running out of annual leave as I’ve had to use that a bit too.
I take so many days off unpaid which doesn’t help financially.

This week I’ve done 2 shifts out of my rostered 4.

And yesterday I did an extra hour on top of my usual 8 to try and help with money as we have other issues going on with my husband’s work stuff.

I did 9 hours, and felt great, like I could have worked 12!

Today I’ve woken with a sore throat and that intense fibro/cfs fatigue.

And now I have the guilts.
Because I’m meant to work but I don’t feel like I can. I’m 38 years old and feel useless.

I know my overall fitness/weight could improve but if I don’t even have spoons to work to pay the bills where do I get spoons for exercise?

I am frustrated because I want to feel normal and be able to work and provide but my body is screaming at me to rest.

Resting in itself is triggering for me now anyway, thanks to a newly recalled traumatic event from 20 years ago.

I hate all of this.

Just curious about differing views on whether it is worth reporting or not. My assault was almost 20 years ago. Debating with myself if it is a good idea or not and wouldn’t mind some advice from people who made up their minds one way or another and why.

I am trying to recall what was in the building that is now called Percy and Percy cafe in Hargreaves st before it was a cafe.

Was it another business or was it a private residence?

Been taking LDN for a few weeks. Started at 1.5, went up to 3 and now been taking 4.5 for a week and a half.

I am having increasing panic feelings and heightened emotion.

Also crippling fatigue where I just need to go to bed in the middle of the day.

I’m going to drop back to 3mg from tomorrow and see if that helps.

Hard to know if it’s a side effect of the meds or the EMDR I had last week for my ptsd therapy.

Don’t feel great though, and don’t want to feel like this. Hopefully dropping dose down will improve it.

I am a person who never naps in the day unless I am unwell. I have had lifelong insomnia and sleep is not easy. Especially if I have caffeine.

Today I had a coffee and breaky at Starbucks. Then we went to 2 shops and picked a couple things up. And then came home to chill out

By mid day I was almost falling asleep at my computer. I had to lay down. I was having palpitations and it felt like my body was shutting down all over. Everything heavy and tired.

Has anyone experienced this?

Been on meds for 3 weeks now. (Gabapentin, Celebrex, ldn). This is a first.

After getting an interrupted nap thanks to my kiddo, I feel like shit really sluggish and dizzy.

Is this likely adjusting to the medications or something else?

Is anyone else on gabapentin and did it make you irritable?

I feel really snappy and annoyed about the littlest things.

Only been on it for 5 days, today being the first day I went to morning and night doses (100mg BD).

Feeling like I’m on my last nerve all the time.

I hope it’s just an adjustment thing.

Been struggling with fatigue and pain for 20 years. And I’m only in my late 30s!

Today I travelled over an hour and a half and had an initial consult with a specialist who diagnosed me with moderate fibromyalgia.

He also noted I have Raynauds, Costochondritis, and likely POTS or some form of dysautonomia.

I have carpal tunnel in one wrist and ulnar nerve issues on the other arm.

He also thinks I have possibly got Thoracic Outlet Syndrome.

I have a plan for various follow up tests; more bloods to rule out autoimmune, adrenal fatigue and other things. Scans and things to figure out the extent of inflammation and the extent of nerve/tendon issues.

I have several medications to start with.

It has been so hard to find someone who will listen and look at the whole body experience and not just one single thing at a time, or blame it on obesity or anxiety etc.

Excited, overwhelmed and relieved.

So just over a week ago I had a visual flashback the reopened an old wound and provided more information on what I had down played as an incident while intoxicated.

I now know I was graped. And I believe I was likely drugged.

This was almost 20 years ago so not recent.

All my life I have had issues connecting my emotions/thoughts/feelings to physical sensations

I assumed it was due to emotional abuse from childhood and being late diagnosed autistic.

Last night I had a somatic flashback. I couldn’t remember the part of the night that I was talking about cognitively but my whole body reacted. It was a sudden flush of adrenaline, feeling total fear reaction.

It was awful and scary. I guess this is what I have to look forward to now with processing all this.

What do you all do when you have those physical kind of memories?

Unsure of the exact time but about 18-20 years ago when I was a student I had an incident that for many years I fobbed off as “just an assault”.

Over the years I have ignored that incident as something that happened when I was young and dumb.

I have got married, had a family and been thru hella other things over the years to the point where I’m finally in therapy for the last few years to treat CPTSD that stems from a number of things including back to childhood and shitty parents.

I have successfully reprogrammed a few of those things in EMdR.

Just this week I had an edible gummy and i had been enjoying these recently because they made me learn a lot of things about life and the universe.

This time I had a flashback. It was from that incident.

I wasn’t experiencing fear, pain or trauma in the flashback but rather I was kind of groggy and acknowledged the incident for what it was.

I wasn’t just assaulted I was actually graped.

It has messed with me all week.
Nightmares
Feeling on the edge of a panic attack
Feeling sick
Not being present in real life

I hate this.
Why does it have to come up now

I have suspected joint hypermobility for a while.

I have had a lot of randomly occurring injuries.

This time it is a sprain to my knee. From sitting cross legged and then straightening my leg.

That’s all I did.

And now I have medial ligament pain and it hurts to walk, it hurts to rest and it especially hurts getting in and out of the car.

Dr was like “that’s so weird”.

But nobody ever brings up hypermobility. And every time I bring it up they fob me off.

Seeing arthritis specialist for ? Fibromyalgia in May. Hopefully he’s a bit more interested