#chronicpain

In rest mode. Lots of arm and shoulder pain making it difficult for me to do anything. Mental overwhelm has me leaving all thoughts of action to lie dead at my feet.
I need rest rest rest. Stillness.
A little white while ago I sat in meditation/visualization until I felt like napping. Visualization is so calming for me.

#chronicpain

I really hate #fibromyalgia today because it is exhibiting itself in all of its symptoms and I am having a hard time coping, especially with the #chronicpain and all of my attempts at distraction are failing. Just meh.

Hello hour 12.
#migraine #MigraineBot #ChronicMigraine #ChronicPain #ChronicIllness

#migraine day and I’ve used up all the medication days this month. So I guess today’s just a write-off.
#ChronicIllness #ChronicMigraine #ChronicPain

After 18 months, multiple doctor visits, two cortisone injections that didn't work, an xray, ultrasound, and MRI that showed multiple serious injuries, 12 weeks of physio with reports back to the doctor saying my progress was plateaued and not moving forward, I finally got a script written for some pain relief.

Although that pain relief is tapentadol SR, which is probably going to do next to nothing.

At least this is a step closer to getting something written up that might help when I call back in a week to let them know I'm still in pain.

#Disability #fibromyalgia #ChronicPain #ChronicIllness #Medical #Physio

On Saturday morning, I'm riding a #bicycle from San Francisco to Los Angeles (530 miles over 8 days) for the THIRD TIME. I'm doing this to raise money for the Arthritis Foundation.

I would be honored if you would have a look at my fundraising page to read my hilarious story and see the non-financial ways you can support me.

Thanks in advance.

Much love,
Adarsh

https://events.arthritis.org/index.cfm?fuseaction=donordrive.participant&participantID=291263

#BikeTooter #SFBA #Oakland #LosAngeles #Autoimmune #ChronicIllness #ChronicPain #Fundraiser

I made a little doodle comic about how I’ve been feeling lately. Dealing with medical stuff can be overwhelming. The whole comic is on my website!

https://www.radiochio.com/comic-consumed/

#webcomics #chronicpain

@BootsChantilly Isn’t life a trip?
#chronicpain #chronicillness

Trying to get the strength to call my doctor's office for the 100th time this morning to try to get them to correct the specialist referral they sent for the 4th time because the specialist can't see me for what I need to see them for unless the doctor has written it on the referral even when I seem to know more about why I'm seeing them than the doctor does. (They wrote a referral for a diagnosis I already had 8 years ago...)Dealing with him is so frustrating that I usually end up in tears and then he tries to offer me psych meds. It's like, I'm sorry this isn't a brain imbalance, this might genuinely be a you problem.

#healthcare #healthcareInCanada #healthcareWhenPerceivedAsFemale #medicineWhenQueer #CanadianMedicine #FML #chronicIllness #chronicPain #mecdf #pots

I'm so thankful that I just get a quiet day today.

I'm salt sweeping the kitchen and living room, putting on washing, cleaning up the kitchen (it's a nightmare after my housemate working from home the last two days), and playing some games.

#QuietDay #Relaxation #RestIsResistance #audhd #autism #adhd #disability #ChronicPain

Having a high #pain day and feeling especially defeated

#chronicillness #chronicpain

Two of the most vexing #health problems in America and much of Western society are #depression and #chronicpain. Might the two conditions be related? Highly related, new research finds. The realization could help patients and #mentalhealth care providers rethink how both ought to be treated.

https://medium.com/wise-well/double-trouble-pain-is-depressing-depression-is-painful-d84c41026fbe

#Fibromyalgia means putting my body first & respecting my limits
#disability #WomenWithDisabilities #WomensMentalHealth #ChronicPain

#Fibromyalgia means putting my body first & respecting my limits
#disability #WomenWithDisabilities #WomensMentalHealth #ChronicPain

busybee: fluffy rambles: Comic progress (or lack thereof) https://beesbuzz.biz/blog/8297-Comic-progress-or-lack-thereof #Fibromyalgia #ChronicPain #Comics #Blog

I feel like I’m finally back to normal. I managed to train at the gym every day this week, and my muscles are strong again. My guts are operating the way they should, and my toothache has receded to manageable levels of pain. I wrote a flash fiction, a new chapter for my manuscript, and I did housework. I sure wish I could be this way every week, but my disabilities crop up randomly and grind me to a halt. All I can do is maximize these good days. #spoony #ChronicPainWarrior #ChronicPain #InvisibleDisabilities #FitAfter50

Kind of feeling like #mastodon is going to be the place where I'm my most full self (of online spaces) much like tumblr used to be. In no particular order, I feel free here to write about living with #ChronicPain, #parenting, #Quaker stuff, art, gardening, #WhitenessRecovery, getting to know people and building community, while also being exposed to a wide WIDE world. It feels like the best fit for me, in most ways.

Will the war on #ChronicPain sufferers ever end? https://brucegerencser.net/2023/08/will-the-war-on-chronic-pain-sufferers-ever-end/
Government has forced upon doctors or pharmacists numerous rules that make it harder and harder for chronic pain sufferers to receive relief.
#WomensHealth #DisabilityPolicy #WomenWithDisabilities

Will the war on #ChronicPain sufferers ever end? https://brucegerencser.net/2023/08/will-the-war-on-chronic-pain-sufferers-ever-end/
Government has forced upon doctors or pharmacists numerous rules that make it harder and harder for chronic pain sufferers to receive relief.
#WomensHealth #DisabilityPolicy #WomenWithDisabilities

Also, being face to face in a room full of people for 8 hours a day, 2 days next week is:
- a HUGE fucking covid risk
- going to have me dysfunctional for the rest of the week
- a waste of the time I should be using to get my assessment handed in

#Centerlink #Unemployment #audhd #autism #adhd #disability #neurodiverse #MentalHealth #Anxiety #MentalIllness #ChronicPain #university #Academia

(Not ME-specific)
Green Paper on Disability Reform: A Public Consultation to Reform Disability Payments in Ireland

https://www.gov.ie/en/consultation/3b001-green-paper-on-disability-reform-a-public-consultation-to-reform-disability-payments-in-ireland

@chronicillness
@spoonies
@disability
#Disabled
#Disability
#neisvoid
#chronicillness
#chroniclife
#ChronicPain
#Spoonielife

Tonight’s jagged shapes doodle.

🖍️🩷❤️🧡💚🩵💙💜🖤🩶🖍️

#DoodlingTherapy #ArtTherapy #JaggedShapes #ChronicPain #StacieBee

Every fvcking day for years...
#ChronicFatigueSyndrome #ChronicPain
#NervePain #LongCovid #MECFS #POTS_Syndrome

Over it, hate it, need to find treatments or a cure or send me to the other side of this black hole. https://mastodon.social/@effinbirds/111086540086224697

Update, just creating the poll and seeing like 2 votes activated my hyperfocus lmao. I wrote and wrote, and now here we are: https://mersontheperson.micro.blog/2023/09/20/sick-vs-well.html

And of course, tags: #disability #chronicIllness #ChronicPain #wellness #pwme #mecfs #disabled #LongCovid #chronicpain #accessibility #pwME #MyalgicEncephalomyelitis #mentalhealth #adhd #ableism #depression #chronicfatigue #autism #neisvoid #dynamicDisability #medicalGaslighting #internalizedAbleism #burnout #autisticBurnout #bias

If you read this article in #TheEconomist just know that #FND is not a diagnosis of exclusion. No matter if “some doctors joke grimly [it] means “finding no diagnosis””. An otherwise amazing article which ironically discusses many of the issues people living with #FND face.
#health
#ChronicIllness
#ChronicPain #FunctionalNurologicalDisorder
https://www.economist.com/science-and-technology/2023/09/20/how-common-infections-can-spark-psychiatric-illnesses-in-children

3/

"My doctor signed it without question. I still was not comfortable with the term “disabled” then and I was still trying to pretend I could physically do what I was longer able to do. “Passing” as able-bodied was significantly easier than trying to live with disability (or so I thought at the time), and I was coasting on denial as long as I could."

@chronicillness @spoonies @disability @mecfs @longcovid #chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness

🧵
"To Anyone Afraid to Get a Disabled Placard Because You're Worried About Judgment"

https://themighty.com/topic/disability/what-to-know-about-getting-a-disability-parking-placard/

@chronicillness
@spoonies
@disability
@mecfs
@longcovid

#chronicillness
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#Spoonies
#Spoonie
#ChronicallyIll
#ChronicIllnessMemes
#Butyoudontlooksick
#Invisibledisability
#Disabled
#Disability
#Hiddendisability
#Hiddendisabilities

1/

Also, it amuses the fuck out of me that this is a sex related injury.

The christians were right! Masturbation will end up in eternal torment!

..they just didn't warn me that it would involve so many medical tests.

#Disability #fibromyalgia #ChronicPain #ChronicIllness #Medical #Physio

Also, this is not a criticism of my doctor or physio. They are both amazing, and I'm super lucky to not only to have access to them, but to have access to them under a system of socialised medical care.

At all stages they were thoughtful and listened to me, and didn't gaslight or ignore my concerns (which are things that DEFINITELY happen, especially to people read as women, and especially especially to Aboriginal people).

My complaint is that the tools medical professionals are given aren't sufficient when dealing with people who have chronic pain disorders.

#Disability #Pain #ChronicPain # Physio #Medical

This is why asking people with chronic pain issues what their pain scale number is doesn't work.

When I did my shoulder injury, there was a definite POP sound, & the pain was about a 2/10.

I ignored it for about 4 months before going to the doctor, bc while it was still sore & I couldn't' move it quite properly, I knew that my doctor would tell me it was probably a sprain or a strain & that they could take some months to heal.

My doctor said exactly that, & when I pointed out that it had already been 4 months, sent me for an XRay and ultrasound, decided it was bursitis & sent me for a cortisone injection. The pain was maybe a 4/10 on the worst days at this stage. My range of motion was impaired, & the pain being constant day after day was wearing on me, as was only sleeping a couple of hours at a time... but hey, I have a chronic pain condition. I can just suck it up.

6 months after the cortisone injection I go back to the doctor bc of the pain, it had gotten slightly better for a while, but now it was about a 6/10 & by this point had been going for nearly a year. He explained that cortisone often needs a second course, & that 6 months is about normal for it to 'wear off', so we'll do another cortisone treatment, & this time refer me to physio as well (to start a few weeks after the cortisone so that the swelling etc was settled).

The cortisone dropped the pain back to maybe a 2/10 most days, but I was still not sleeping properly and my range of motion was getting worse.. or maybe I'm just getting more tired of being in pain all the time? I don't know. At this point I started wondering if maybe this is just what 'old' is for me, & maybe I was being a sook & didn't have such a high pain tolerance after all.. especially if the pain is like a 2/10 & I'm getting this upset about it.

It never occurred to me that I was getting so upset about it bc my pain was NOT only a 2/10.

After another 3 months of physio not really doing anything, I went back to the doctor & asked for an MRI.

The MRI shows:
- the shoulder had dislocated
- one high-grade tendon tear with a significant retraction of the tendon
- 3 other tendon tears
- muscle volume loss
- bursitis
- mild arthritis with degenerative changes and joint effusion and thickening
- a SLAP tear with fraying in two places
- two lesions where the bones smacked against each other in two different spots during the dislocation
- a muscle and a tendon sprain
- 2 other effusions
- another thickened and frayed ligament

All of this should be able to be dealt with via physio rehab, except the SLAP tear, which will need a surgical review & will (best case) be able to be dealt with via an arthroscopy.. but might need a more serious & invasive surgery.

That's 18 months of pain, sleep loss, & inability to function to my normal level because the experiences of someone with a chronic pain disorder can't be summed up with "between 1 and 10 how painful is it?"

#Disability #Pain #ChronicPain # Physio #Medical

Doodling the pain. It’s jagged. There are a couple that look like dinosaurs to me. I randomly made jagged shapes. I started this one yesterday and finished it today.

🖍️🩷❤️🧡💚🩵💙💜🖍️

#DoodlingTherapy #ArtTherapy #JaggedShapes #ChronicPain #StacieBee

Sanism is normalized in relationships with institutions.
It’s not talked about.
It’s woven tightly into unquestioned assumptions (common sense knowledge)
It’s a tool for power and control.

#MadLiterature
The Wildflower Alliance

Grassroots Peer Support, Advocacy, and Training organization with a focus on harm reduction and human rights.
https://wildfloweralliance.org/

Thank you @leftvu 😍

Hashtags and groups below

#PeerSupport #AltMentalHealth #instutionalization
#Ablesim #DisabilityCommunity #InvisibleDisabilities
#PsychiatricSurvivor #AntiPsychiatry #DisabilityJustice
#LivedExperience #PsychSurvivor #ChronicPain
#DisabilityMastodon #Neurodivergent #RadicalMentalHealth
#CripCamp #DisabilityRights #NeuroDiversity
#Sanism #Disability #DisabilityStudies
#Stories #isolation

——

@MadMovementMastodon
@disabilityjustice@a.gup.pe
@disability
@DisabilityJustice@chirp.social
@disabilityhistory
@neurodivergence

MRI done.

Just as an aside, if you have piercings, check with the MRI tech before pulling them all out, because it mightn't be necessary.

Now, to get all these unnecessarily removed piercings back in...

#Disability #fibromyalgia #ChronicPain #ChronicIllness #Medical #Physio #Piercings #BodyMod

It's MRI Day!

Hopefully this will actually find what the problem with my shoulder is, and will lead to finally being able to do something about it so I can raise my arm again.

I guess I'd better start removing my piercings...

#Disability #fibromyalgia #ChronicPain #ChronicIllness #Physiotherapy #Medical

Has anyone else experienced anything like this?

I can't be the only one.

I have an appt with my #rheumatologist on the 26th--I can't wait to hear what she has to say, because I'm flabbergasted. /end

#AutoImmuneDisease #AutoImmuneIllness #ChronicPain #RA #PsA

Are #terpenes a real #pain relieving thing? Still legal in Oz.

#Myrcene has been suggested.

Microdosing #mushrooms of various kinds have also been suggested. Can’t get the magic kind without a prescription from a psychiatrist, but the rest are legal afaik. Do they work?

#ChronicPain
@chronicpain #NEISvoid #MeCFS #PwME @mecfs
#ChronicIllness @chronicillness

For anyone suffering foot or ankle #pain or who struggles to find good supportive shoes that will accomodate prescribed inserts, I just got a pair of cute ballerinas from a danish company called "New Feet" that I'm pretty impressed with.

The #ChronicPain in my ankles was markedly less once I had them on, which was an amazing feeling, and the inner sole is designed to be removable to allow one to put ones own inserts in without ruining the shoe or the fit.

I think they may only be available in northern europe at the moment, but just wanted to share, cause I know how hard it is to find good, comfortable and supportive shoes when you have gammy feet and ankles, and figured it may help someone out there!

https://www.new-feet.com/

#CTEV

Please help me find a #GP/any #doctor willing to prescribe #fentanyl patches (or dose equivalent) within 6 days in #Melbourne #Australia

Refused meds by GP who promised to prescribe until I found a new GP (he dropped me bc my case is too complex). Changed his mind! Now have 6 days to find any doctor to write a script or #withdrawal agony & no #pain control.

Time running out fast!6️⃣ DAYS 😫

#Boosts helpful!

#ChronicPain
@chronicpain @mecfs #MECFS
#PwME #MedMastodon
@longcovid @chronicillness

6/

"7. “I’m in more pain than someone could even imagine. I wouldn’t wish this pain on my worst enemies. I don’t like to complain to those around me because if I did, I’d be complaining 24/7 and I don’t want to be ‘annoying’ or ‘a burden’ to anyone.”

@chronicillness @spoonies #fatigue #chronicillness #chroniclife
#Spoonielife #hiddenillness
#invisibleillness #ChronicIllnesses #Spoonies
#Spoonie #ChronicallyIll #ChronicPain #ChronicPainWarrior #ChronicPainAwareness

I'm realIy curious about this, but don't know where or how to ask. Maybe it's been discussed and someone can point me in that direction?

How aware are able-bodied people (and those without chronic pain) of their spatial position / bodies in space?

Say, you walk into the kitchen and open the fridge. How much do you think about the actions required to do so?

#disability #physicaldisability #chronicpain

Here's one of the resources and it's really helping me feel seen/heard: https://painguide.com/about/

#ChronicPain #NEISVoid

I’ve been doing something I call doodling therapy. I tend to increase my doodling when not doing well. I did a lot of doodling after my dad passed in 2020, and after my surgery 2 years ago.

My therapist told me yesterday that it is art therapy and is proven to be beneficial so was glad I had that to turn to during this difficult time.

#Doodling #DoodlingTherapy #ArtTherapy #ChronicPain

Ugh.. I've woken up sick.

Time for today's episode of
🥁druuuuuuumrooooooll🥁

"📺is it covid, is it a flare-up, or something completely different?📺"

#fibromyalgia #ChronicPain #ChronicIllness #Disability #covid

An old one, but a good one.

I think I'm Van Gogh, today.

#chronicpain #fibromyalgia #meme

@qotca Thanks for sharing this personal story. Very best wishes for the light dimmer to make it all the way back!

I can relate somewhat to your story. A nasty chest wall injury disabled me and put me in #ChronicPain that I started to lose hope of ever seeing the end of. Fortunately, after two years, my own physical light dimmer kept going up and up and now it’s like it never happened most days.

Having a really low day... I could barely sleep last night, struggling with insomnia, ADHD, and pain.

Pain especially... it's finally starting to cool off a little and my chronic joint pain is through the roof, and I just got off a week of being sick with a cold.

I'm really depressed right now and feeling trapped. My car has been out of commission since February and my joint pain makes it hurt so much to walk places (and taking the bus still involves a significant amount of walking/standing)... so I've hardly left the house all year.

I hardly see anybody and I'm really lonely, if I didn't have my sibling living with me I don't know how I'd survive.

Please send some kind words to fight off the intrusive thoughts.

#disability #depression #ChronicPain

If things go bad & I can’t get #pain #meds on time, can anyone recommend #herbs/remedies/whatever to help withdrawal?

Also, is there anything legal & equivalent in pain control to 25ug fentanyl (not as strong as you think). If I can find something I don’t need a script for that would be great so I’m not held hostage like this in future.

Medicating yourself is pretty much illegal in #Australia unless it’s alcohol.

#Kraktom is illegal btw & I don’t have enough dodgy friends.

Also wanted to point out that I have #endometriosis & this mofo dr doesn’t think I need painkillers.

*tears phone book in half*

Endo remedies welcome. No hormones please. IUDs or otherwise. I’ve had oestrogen blockers pushed on me but refused because of the huge osteoporosis risk. Turns out they don’t help & oestrogen isn’t the problem in endo…🤦‍♀️

If you’re getting cannabis products in Australia let me know who and where from. Probably too late atm but for future reference.

#ChronicPain
#Mecfs @neisvoid
@spoonies

If things go bad & I can’t get #pain #meds on time, can anyone recommend #herbs/remedies/whatever to help withdrawal?

Also, is there anything legal & equivalent in pain control to 25ug fentanyl (not as strong as you think). If I can find something I don’t need a script for that would be great so I’m not held hostage like this in future.

Medicating yourself is pretty much illegal in #Australia unless it’s alcohol.

#Kraktom is illegal btw

#ChronicPain @chronicpain
#Mecfs @mecfs #Endometriosis

Therapists of all sorts assume the chronically ill, poor, and disadvantaged need to improve their sense of self worth to improve their condition. Why do very few analysts, policy makers and society in general realize that it is they who need to see the worth of the “unproductive”? We know we’re worthy. We wish others thought so too. #disability #chronicpain #chronicillness #disabilityjustice #socialsecurity #votingmatters

8/

"It’s discouraging and isolating, especially when you feel that you can’t make plans simply because you do not know that you’ll be able to carry them out."

@chronicillness @spoonies @mecfs @longcovid
#chronicillness #chroniclife #ChronicPain
#Spoonielife #ChronicIllnesses
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC

7/

"You may have to start cancelling plans, which can leave you feeling flaky and unreliable, especially when those plans were with someone that saw you on a good day recently."

@chronicillness @spoonies @mecfs @longcovid
#chronicillness #chroniclife #ChronicPain
#Spoonielife #ChronicIllnesses
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC

6/

"Fluctuating conditions are also shockingly unpredictable, especially at first, when you don’t know what will trigger a flare or are not yet experienced enough to recognize the warning signs."

#chronicillness #chroniclife #ChronicPain
#Spoonielife #ChronicIllnesses
@chronicillness @spoonies @mecfs @longcovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC

Standing at a bus stop waiting for a bus to take me 6 blocks. Since standing/walking has become painful, I’ve really noticed how many bus stops do not have a bench to sit on.

#NorthVan #Today #ChronicPain

“Sometimes, the combination of low blood pressure and a high pulse signifies that the body is not getting enough oxygen. This may put the body at risk for shock, which can be serious.”

This is me lately. Usually I have slightly elevated blood pressure that started when my pain crossed the line into #ChronicPain

#LongCOVID

https://www.medicalnewstoday.com/articles/low-blood-pressure-high-pulse#summary

Please help me find a #GP or any #doctor willing to prescribe #fentanyl patches within the next 17 days in #Melbourne #Australia

Refused meds by GP who promised to prescribe until I found a new GP (he dropped me because my case is too complex). Changed his mind! Now have 17 days to find any doctor to write a script or #withdrawal agony for me & no #pain control.

Time running out fast!😫

#ChronicPain
@chronicpain @mecfs #Medicine
#MECFS #MedMastodon
#PwME #PwLC
@chronicillness #SaveMyArse

Please help me find a #GP or any #doctor willing to prescribe #fentanyl patches within the next 17 days in #Melbourne #Australia

Refused meds by GP who promised to prescribe until I found a new GP (he dropped me because my case is too complex). Changed his mind! Now have 17 days to find any doctor to write a script or #withdrawal agony for me & no #pain control.

Time running out fast!😫

#ChronicPain
@chronicpain @mecfs #Medicine
#MECFS #MedMastodon
#PwME #PwLC
@chronicillness @longcovid

@dramypsyd Are there any mindfulness activities particularly suited to those in chronic pain? I have a family member who struggles with the body scan and meditation generally, but who would benefit from some form of calming activity. #ChronicPain

🚨Now down to 20 days!

Are there any #doctors or #GPs here that can help me out with this prescription? Fentanyl or anything dose equivalent. I’d be so incredibly grateful. 🙏

#MedMastodon #Medicine
#ChronicPain #Neisvoid #Spoonie
#ChronicIllness #SevereME
#Kindness #SaveMyArse

@chronicpain @chronicillness @medmastodon @mecfs
@neisvoid
@spoonies

One of the problems of dependence on opioids/opiates is that when you change from med A to med B, you get full withdrawal symptoms for A. Head-in-a-vice headaches are So Fun. #ChronicPain

I’m an atheist but that doesn’t mean I don’t understand how meaningful prayer is for those who believe. The Serenity Prayer is one I still find value in, whoever you decide to address it to. Its roots are in the ancient philosophy of #Stoicism, which taught—a couple millennia ago—changing what you can and accepting what you can’t.

I would also add: “Grant me the gratitude to appreciate the healing from #ChronicPain I’m starting to take for granted.” The #trauma is fading. But I’ll never forget.

As I suspected, the last blood test came back positive. Really wish I didn’t check it at work. I’m on my lunch but I started crying and went over to my desk. I was shaking as I told my boss why I was crying. I texted a friend. Talked to a work friend. Everyone said to wait to hear from the doctor. Trying to calm myself down.

#ChronicPain

One of my friends knew about hypogammaglobulinemia because a family member was diagnosed with it 20 years ago. It was triggering for her when I told her because they didn’t expect him to live longer than a decade. 🤯 She sent me her messages with him about it + he said “I’m supposed to be dead, but being dead is highly overrated” 😆 He found out all the foods he was allergic to + stopped eating them + most of his symptoms cleared up instead of dying. I really hope I figure this out.

#ChronicPain

There does not seem to be any rhyme or reason to when I feel well. So far, today is a good day. Yesterday was a very high pain day.

Results are still pending for the major autoimmune blood test and my theory is that it was positive so they had to run more tests.

I do have something called hypogammaglobulinemia which explains why I get sick so easily. Sigh. At least I never stopped masking.

https://en.m.wikipedia.org/wiki/Hypogammaglobulinemia

#Today #ChronicPain #Immunodeficiency

Please help me find a #GP or any #doctor willing to learn prescribe #fentanyl patches within the next 27 days in #Melbourne #australia

Been refused meds by GP who said he’d continue to prescribe them until I found a new GP (he dropped me because my case is too complex). Changed his mind! Now have 27 days to find any doctor to write a script for fentanyl patches or it’s withdrawal agony for me & no pain control.

Can’t believe this is happening. 🥺
(I was referred to a pain specialist but he said my GP should manage it since he already had the permit and he agreed, but then changed his mind so… it’s neglect/mismanagement/???)

#ChronicPain
@chronicpain@a.gup.pe
@chronicpain@chirp.social
#ChronicIllness
@chronicillness
#MedMastodon
@medmastodon
@mecfs
#MECFS

/4 I've worked some hard jobs in my lifetime (also grew up on a farm), but just staying home every day and dealing with #ChronicPain , I've never worked so damn hard in my life. the biggest thing I did today was cook supper, and I feel like I put in an 8 hour shift at a physically demanding job. I've never worked so hard, for so little pay, for so many hours (24/7), with so few vacations (0), holidays (0), and days off (0)

Don't be foolish, take care of yourselves

Does anyone with #fibromyalgia have a recommendation for a type of doctor to see? I’ve seen multiple rheumatologists and none of them know Jack about the disease. All help is appreciated 🥰.

#chronicpain #chronicillness

Huffpost: I Begged My Doctors To Figure Out What Was Wrong With Me. Instead, I Was Medically Gaslit

https://rb.gy/uewja

Julie Strack on her experiences as a #LongCovid sufferer & how this has given her "a firsthand look at the dismissal faced by patients, especially women, who have #chronicillnesses" & that this is "a familiar story for many people with illnesses as #chronicpain and #myalgicencephalomyelitis / #chronicfatiguesyndrome, or ME/CFS"

@longcovid @mecfs #pwme #pwlc

Updated #introduction since I don't seem to have one pinned anymore. and I just fixed my bio:

Hey y'all, these days I'm called Bishop online (a la Aliens). I'm the kid who was annoying/weird and ignored growing up, so I'm working on coming out of the #neurodivergent shell and finding things to post and people to reply to. My feed will mostly be boosts of things/people I agree with to supplement that.

IRL I'm a self-taught #MultiInstrumentalist #musician of (apparently?) ridiculous caliber. Unfortunately #ChronicPain has hindered me from playing #ElectricGuitar professionally so I've been trying to replace it with #drumming for the last year. Going well so far, joined a band that's got an album mastering, I'll let y'all know if you end up hearing it!

The decrease in pain level from yesterday to today is the most noticeable since I increased my vitamin D substantially on Saturday. But why do I keep becoming deficient?! I’m taking a *crazy* amount now.

I met a work friend for lunch today who I hadn’t seen for 3 weeks so she noticed the improvement right away. She said she was really worried about me + was happy to see me doing better.

Tomorrow is the day I go for tests to hopefully shed some light on what is going on.

#ChronicPain #Today

I checked my email before calling the specialist’s office about the lab requisition. It came through as I was asking them about it!

They’re testing everything under the sun just like last time. It was more than 20 vials of blood last time so I know I can get through it again. I don’t like needles + felt like I was going to pass out last time. I kept saying to myself: “I’m okay…I’m okay…I’m okay” as I looked the other way.

#Today #ChronicPain #Bloodwork

Day 2 of increased vitamin D, + I’m already starting to feel better. I believe something else is going on because I’m taking a LOT of vitamin D. I haven’t been able to maintain a dose that consistently keeps me feeling well so while I am feeling better, I don’t expect it to last.

I never received the lab requisition from the specialist so I’ll call them tomorrow. I’m guessing they’ll test me for everything under the sun just like they did a little over two years ago.

#Today #ChronicPain

Am I the only one? More chronic pain chronicles: Plans with most people require multiple, predictable time periods of high functioning. Few folks are available on immediate notice. So many countless times have I made plans during a feel-good-high-functioning period only to never follow through. Sigh. Just thinking about it is exhausting.

In this thread I continue to parallel #ChronicPain with #depression. I also see relations to my neurodivergent diagnoses. It’s all related if only because 1/2

Chronic Pain Chronicles 7 Aug
Sleep gets disordered when my pain is at its worst. I’m unable to get a full restorative sleep, waking up usually after about 4-5 hours. That’s where I am now, starting my day in the middle of my time zone’s night. I cannot return to sleep now. My drive is to prepare food (that I’m unlikely to clean up after) so that I can consume some medication. I know of no medication or other treatment that removes the pain. It’s all about numbing & distraction. #ChronicPain 1/3

3/3 #chronicPain #mentalHealth
I feel a bit like I’m being a Reply Guy in my first two toots, saying “well, actually” to a past therapist and Oprah. I’m doing a bad job and not saying what I would like. Because pain. Related to my thoughts on the natural bias for success. Effective communication has reach. I push myself to share when I’m not at my best bc that’s also me. An actor inspiring others saying, “never give up on your dreams,” is speaking from a 0.0001% position of success lol.