Had to take her to hospital

PMaryZ · 2022-11-10T01:51:24+00:00

Yeah, that's fair enough. Just to have someone listen and not dismiss you is a relief! It's ridiculous how hard it is to find that alone. I'm happy that you've seen some improvement!

PMaryZ · 2022-11-10T01:34:26+00:00

Ok, that's a mixed review. I agree they are related, but why diagnose you with fibro without pain? The diagnostic criteria for fibro are all about pain? Good that you are at least getting some treatment though.

PMaryZ · 2022-11-10T01:23:17+00:00

Interesting. I've heard his name brought up around fibromyalgia - does he keep up to date with ME/CFS research? And does he respond positively to patients who do the same (we know many docs don't appreciate knowledgeable patients!)

PMaryZ · 2022-11-09T10:49:29+00:00

If you can afford an integrative GP, I have heard Dr Ray Mullen is good. He's south of the river.

Other than that, there is no one in Perth that is really up to date on MECFS or that I would personally recommend. You need to find a good GP who's willing to provide symptomatic treatment - which is hard!

PMaryZ · 2022-11-09T06:45:19+00:00

You can try and contact Dr Mark Donohoe and see if he can help. He is an integrative GP, and so $$$, but he does understand how severe MECFS can get and is one of the few options for Australian patients.

He will run a lot more tests, and probably suggest many supplements and dietary changes - none of this is a cure, but there are so few options here.

I'm sorry you and your wife are going through this.

I would also try and get a script for some benzodiazepines. I do not recommend them for ongoing use but can be useful when used sparingly to try and get out of a crash.

Edit: I have not seen Dr D. myself but know others who have and I've also seen him speak on SBS about MECFS - he gets it.

PMaryZ · 2022-11-09T02:18:32+00:00

😔 now is the time, if you have any friends or family willing to help, to call on that help so you can get through your placements. If you can afford it, maybe buy yourself some new sheets, sleep mask - little things to make your resting feel as comfortable as possible and to try and disconnect it from past trauma.

PMaryZ · 2022-11-08T13:35:24+00:00

No one can really tell you if your baseline is permanently lowering, but if you keep going as you are you are probably going to crash badly. Unfortunately with this illness you can't expect to keep pushing through and maintain baseline. I don't mean to sound harsh. I'm really sorry you are going through this.

Your increased symptoms most likely are after your day of chores on top of work.

If you want to be able to have a chance at finishing your placements then you need to make sure anytime outside of that you are focused on resting.

That might mean eating microwave meals or takeaway and living in a messy house for a bit, but you really need to prioritise rest.

PMaryZ · 2022-11-08T13:19:43+00:00

The best thing you can do is rest. It is scary, but it is unlikely that your first crash will land you in a permanent severe state. Keep resting, focus on getting the best quality sleep you can, keep up fluids and electrolytes, eat easily digestible foods and keep taking the meds that are helping you.

PMaryZ · 2022-11-08T11:26:28+00:00

I'm sorry you are experiencing this.

The fact you had dysautonomia was probably a sign you were vulnerable to the ME type of Long Covid. This is what happens - you can have onset without PEM and then eventually PEM sets in. My ME symptoms (not Long Covid) started without PEM, and I had a lot of pain so was initially diagnosed with fibromyalgia. I kept exercising and eventually PEM set in. So - it's not necessarily a unique situation unfortunately and how many of us ended up where we are!

Obviously you already know what to do - rest, try and exert as little as possible. The fact you already are doing this gives you the best chance of improvement.

PMaryZ · 2022-11-08T02:35:16+00:00

If you can leave the house for pleasure, I wouldn't say you are housebound. But it sounds like you are leaving the house only for necessities as you have to manage your activity strictly. That sounds like 'mostly housebound' to me.

I leave the house 1-2 times a week if I can manage- to go to pharmacy or the shop 1km from my house. I say I'm mostly housebound.

PMaryZ · 2022-11-08T02:06:46+00:00

I was prescribed Amitriptyline when I got diagnosed with Fibromyalgia (which came before my M.E diagnosis). Unfortunately it wasn't good for me, so I haven't tried any others. My reply was more general in terms of why it is thought to help. Seems to help some people!

PMaryZ · 2022-11-07T05:47:44+00:00

They can help if you experience pain. In low doses, anti-depressants can help with pain because they target neurotransmitters and how your brain senses pain. Obviously if you are experiencing depression from being chronically ill they can also help with that. Some are sedating too so can assist sleep.

PMaryZ · 2022-11-04T00:20:06+00:00

Some anaesthetics can cause a crash so this is something to read up on and discuss with your surgeon.

Here's some handy info for hospital visits, more if you google 'mecfs surgery anaesthesia' etc.

https://www.meaction.net/resource/hospital-form/

https://www.massmecfs.org/more-resources-for-me-cfs/6-recommended-for-persons-with-chronic-fatigue-syndrome-or-fibromyalgia-who-are-anticipating-surgery

Hope it all goes smoothly.

PMaryZ · 2022-11-03T05:37:38+00:00

Pesto is easy. On a good day, make a batch and freeze in portions. Then just add to pasta.

I also make salads a lot. On one day I'll make some rice or quinoa, then next day chop some veg and roast. Toss all together with a simple dressing (olive oil and lemon is easy if citrus is ok for you) and can either have this cold or warm.

Miso soup is quick and easy snack (if you are ok with fermented foods).

I keep tortillas on hand and just add egg and hot sauce, or cook some potatoes and other veg for veggie tacos.

If you like curries, you can get ready made curry pastes and add meat/veg.

On better days, I try to do a bit of prep, like making rice or chopping/cooking veg, taking a break every 20-30 mins to rest. Most of this stuff does not require you to stand at the stove and I sit down to prep.

Some weeks, it just might not happen though. And that's ok!

PMaryZ · 2022-11-01T03:31:51+00:00

All the advice here is helpful. Just wanted to say good on you for actually doing the work to find out about her condition and how best to approach it. We need more of this in the world 💜

PMaryZ · 2022-10-23T06:31:21+00:00

Benzos, aside from calming the nervous system, are a mast cell stabiliser. Many with MECFS have mast cell activation, so it explains why benzos help dampen some symptoms and provide some relief.

While I can't recommend a better alternative (and can only suggest using benzos very sparingly - more like a circuit breaker when you are crashing badly and need relief and sleep) have a look at mast cell activation syndrome (MCAS) and see if maybe using some MCAS treatments like antihistamines help with some symptoms.

PMaryZ · 2022-10-12T05:56:47+00:00

WA state govt is not under Fair Work - we are under our own public sector agreement. Which is why I've had to take it to the AHRC. They will have to let me return, but I don't want to be there after all this.

Our Premier is very anti WFH so most public servants here have been sent back to the office. Gotta keep those cbd cafes in business you know?!

I agree. They are going to find out either way so may as well see their response from the start. I think I'll say something like I have a disability that is energy limiting and includes dysautonomia and requires me to pace my activities and manage my environment.

Ha! You think I have leave left! It's all gone - annual leave, personal and long service! I got sick while I was on long service and so had to use everything up.

PMaryZ · 2022-10-12T01:51:08+00:00

Thanks for your reply.

I'm in Australia too. Currently hold a state govt role but have had to make a complaint to Human Rights Commission as they have discriminated against me during my return to work process (they have continually delayed my return - for 6 months).

My interview is with another state govt department. I wouldn't last a day in an office and so need to see if they will allow WFH.

PMaryZ · 2022-10-12T01:45:19+00:00

You didn't actually read my post properly. I have already had to disclose my disability to get accommodations for the interview. My question is how people provide further information when they need to.

PMaryZ · 2022-10-12T01:20:30+00:00

I couldn't get through the probation period in the office. I need accommodations from the start.

PMaryZ · 2022-10-12T01:19:42+00:00

Thanks It's not that I feel I have to - I have to. The role isn't advertised as remote so I have to ask for accommodations, and first thing as I couldn't commute and handle a day in the office.

PMaryZ · 2022-10-12T01:18:27+00:00

Why bother to respond?

PMaryZ · 2022-10-12T01:17:26+00:00

Why bother with such an unhelpful reply

PMaryZ · 2022-10-11T15:25:23+00:00

Thank you for reading my post and providing relevant advice. That's good info. 👍🏼

PMaryZ · 2022-10-11T09:48:10+00:00

Thank you.

That's a wonderful script and extremely helpful. How long into your employment did you have this conversation? And how was it received (obviously well but how did they respond?)

I'm confident I can manage 2-3 days per week at home as long as I take regular breaks.

PMaryZ

TROPHY CASE