#I just got some fibro meds that will hopefully help with the pain

[samuraisharkie]

not going to be online all that often anywhere (or if I am it will be sporadic) for a bit due for mental health/physical health reasons but dw im getting some help and I have people supporting me, just need to focus on recovering for a bit. doesn’t mean I’ll be unreachable or that I’ll never be online while I’m recovering just that I’m officially declaring that this is something I need to do for myself in order to actually make progress getting better

[crps-chronicpain-ptsd]

#CRPS

I’ve dropped my opioids by 11 mg a day, even though I had ketamine infusion in hospital I feel like I’m withdrawing bad this time,last yr I managed to drop 9mg after ketamine but I didn’t have any complications with infusions & I can’t remember any withdrawal. I think I’ve been on opioids for a minimum of 6 yrs maybe more I used to be on over 80mg,it’s totally destroyed my gutt health hopefully after next yrs procedures &infusion I’ll be able to come of this crap for good & just take endone as needed for pain & use sublingual ketamine in between infusions along with medical marijuana &LDN I lost over 30kg doing that last time but then covid happened my partner lost his job after 28 yrs in firm & I couldn’t afford to take all that & insurance doesn’t fund any of that ,it only funds opioids morphine all the stuff that fixes one problem but creates another 20 but what choice do you have when it helps with pain & without it I wouldn’t be here I definitely wouldn’t be able to leave the house for sure &would struggle to just get out of bed so yes it helps with pain. one of my specialists said if it ain’t broken don’t fix it ,but it has created so many side effects especially when it comes to my gutt health & I’ve put on all the weight again very quickly,the side effects are so bad,you don’t notice it till you cut down my partner finally got a job &Is working again so I’m very grateful I can now afford the sublingual ketamine next I’ll get the medical marijuana ,then the LDN so bloody expensive having crps i had to decide what I was going to go without like my Kakadu juice my passiflora turmeric collagen .VITAMINS add up too if I stop taking high doses of vitamin C or D or my magnesium &an general womens health one I feel it I’m exhausted,my fingers feel even more broken I feel like I’ve run a marathon each night,then there’s all the probiotics the biotin for my nails& hair &that’s just my crps & fibro meds then I have my ptsd depression anxiety bipolar medication my bedroom is like a pharmacist.Wish insurance companies paid for what ever helped you manage your pain best,what ever gives you more fragments of life.My partner not working for over 18mths meant I had to up doses of meds they paid for,made me DEPRESSED undid all my hard work I had to limit &choose which vitamins topicals meds I could afford, I only took sublingual ketamine when I felt a flare coming or during a flare ketamine is amazing for turning down the noise& when I say noise I mean the air against your skin vibrations noise smells hair follicle burning tmj ect doesn’t take the burn away helps manage the sting, magnesium sprays are amazing too as are essential oils blends for pain cannabis oil DMSO IS AMAZING for Allodynia topically but expensive I’ve tried so many things in search for pain relief ,sensory relief now &have the knowledge but not the money to fund it all.l if I ever win Tattslotto I’d definitely give the Spero clinic a go & pray I got to ring the bell for 0 pain sounds like an impossible dream but you never know guess I better start playing lol if anyone has sensory issues the loop buds are amazing,MuseS I’ve been using for sleep, to lower blood pressure distract from pain&help me breathe maybe I’ll do a post with some pics &a video let me know if you’d be interested In that? I’m waffling now trying to distract my mind from withdrawals & restless legs still have acute pain from procedures & it could also be the after effects of coming off ketamine who bloody knows I had my new batch of ketamine made prior hospital a berry strawberry with sugar as I hate the bloody taste it triggers my ptsd the taste reminds me of the smell of anaesthetic should have said no to sugar as I don’t want to loose my teeth was excited as it was tolerable prior procedures I forgot my taste buds don’t work properly part of the sensory issues I get,anyway post procedures it’s still tastes bloody disgusting & is still triggering ptsd so won’t be getting sugar added for next one.Wishing low pain days for all 🙏 chronic pain problems •

[thedrawingduke]

hello! Is Fantomestein on hiatus? It hasn't updated in quite a bit

Hello! Ah, yes--Fantomestein has tragically had to take an unexpected and unplanned hiatus due to my life just getting real crazy! 

In summary: 

(Summer) I got evaluated + diagnosed with some heavy psychological issues and promptly became very ill this summer (all whilst helping my family move ha HA) Danger levels of Depression.

(Fall-Winter) Still sick, I had to get through my last semester of school and graduate while also completing some big freelance things. Also! Working on Fantomestein’s eventual move to a Much Better Place.

(Winter) Post-graduation started with more medical diagnoses and I am still adjusting to diet/lifestyle changes (that are hopefully going to help my chronic pain/fibro). I’d prefer to find alternative solutions to just piling on more meds (most of which, I can’t take, of corpse), so I am looking into mayyybe getting a service dog?

ECCC is coming up! Gotta make more merch! *sweats*

You all are the best for putting up with my irregularity and silence for the past...gosh, 6 or so months. This is definitely not how I saw this year going but I am very thankful for everyone who helped me through some of the toughest times I’ve had to date.

(Also I am working on the new update, FINALLY--so i hope to return to updates soon!)

[expertchick]

When I was 18 going on 19 I had been diagnosed with Mental health issues & In and out of hospital with that and Gallstones with pancreatitis  ….. I thought can it SERIOUSLY GET ANY WORSE? I had my op to have my gallbladder removed. Started treatment for my Mental health, In & out over  the years, Some help then no help as the system is now systematically F&CKED!

and a million questions…

I go to the Bath Mineral hospital for an appointment This is Summer 2015. I go in with my Partner. And there is it is … I explain what’s been going on & the Consultant she tells me I have Fibromyalgia. It felt like the WORST day of my life. She told me I would suffer with chronic fatigue, pain, other symptoms and give me some literature. Put her hand on mine and told me there is no cure.

I cried for days, weeks … I cant remember. But the tiredness all the time, all the different pains I  feel and they change all the time. I start my treatment but again System failed me. I just have self help and GP help now…. the RUH wouldn’t have me, Salisbury lost the letter to them and my partner driving me to all these appointments of getting no where? I decided I/We would mange it – Like the gifts he gets me to help!

In 2014 I got sick with food poisoning … I was a receptionist at the time and I was recommended by all my colleagues to go to the bakery. I did, I got a bacon/Cheese Gluten free wrap – I Feel a bit nauseated now as I remember it vividly. It was cold, hard, chewy & I threw half of it away ….. about 45 minutes later I start feeling ILL, sickness/The runs from my bum. I am then signed of work for two weeks every time I tried to go back in they said no I still didn’t look right …. once the actual food poisoning had gone  I had terrible fatigue & I would get these pains in my legs & neck that would put me in such despair and my partner tried to comfort me. The GP was aware of my sicky sandwich issue and we were starting to look into CHRONIC FATIGUE SYNDROME – Which is basically a symptom of fibro anyway. A few months after investigations and tests, pain and a million questions… Oh and the abuse from the staff after environmental health wouldn’t take this seriously nor the shop.

I go to the Bath Mineral hospital for an appointment This is Summer 2015. I go in with my Partner. And there is it is … I explain what’s been going on & the Consultant she tells me I have Fibromyalgia. It felt like the WORST day of my life. She told me I would suffer with chronic fatigue, pain, other symptoms and give me some literature. Put her hand on mine and told me there is no cure.

I cried for days, weeks … I cant remember. I still cry now when I really cant hold it together with pain.  But the tiredness all the time, all the different pains I  feel and they change all the time. I start my treatment but again System failed me. I just have self help and GP help now…. the RUH wouldn’t have me, Salisbury lost the letter to them and my partner driving me to all these appointments of getting no where? I decided I/We would mange it – Like the gifts he gets me to help!

I went through the motions … Denial, Despair, My life is over kind of thing …. Morphine, Tramadol, A dosset box full of drugs all the time and I HATED ALL OF IT. Not even being able to recognise my own body anymore. I always, ALWAYS have bruises or rashes I cannot explain. So to be fair its not that invisible I just hide it. Including eye bags from the fog & fatigue! I worked since I was 13 …. over the years had more than one job at a time, worked, earned well & played hard too! Then It all stopped. Since then Employers have not quiet understood what’s wrong. I was discriminated for having mental health back when I was 19 … they were fined by ACAS & I was compensated but I wanted to keep my job! Then another business did it & so did another. But I didn’t take legal action …. in part because they were so understanding & might I add this was at the BEGINING!

Then they would turn nasty when I had a flare or got a cold because it would set of the fucking flare! Each one gets worse each time and it still does to this day. My migraines make my temples throb & I have to wear glasses but the medication for that has now stopped working …. another wonderful thing about medication. You become immune or it has horrible side effects.

Last year I was diagnosed with Alopeica areata after a bald spot was found by my partner after he came home (When my partner had his accident last year) & Ehlers Danlos Syndrome Hypermobility overlapping my fibro – as a kid I was very active. Sports, running clubs (Cross country ect) Ballet, Karate and so on ….. I didn’t know that this could actually affect me later on in life because my GP at the time mentioned being too active, my joint pain & the clicking ect is kind of a manifestation from that the fibro, becoming weak and my immune system is being attacked by the alopecia & obviously my mane … I know right what a goddamn list! And I swear at times I need a hip/ankle/elbow transplant! Ha!

But With my Holistic Treatments, Medications, A Great GP with continuity, close friends & family, other professionals who intervene and adequate help ….

I have come to understand there is a LIFE …. there just will be obstacles for those of us with Mental health & Chronic/invisible illness & pain. Or any illness. Lucky for those of you if your getting the tip top, best kind of treatment and help. But those of us who don’t have to self manage,  cope, rely on the ones who do help us frequently and even they get tired. Because there is still so much ignorance in the world. So An invisible illness… look again I promise you your life changes and when you get used to your new body/life things change. Better and worse.

If you cant see it doesn’t mean it isn’t there & never judge a person just because they look “well” or get over it …. We are fighting a battle daily that sometimes we lose & sometimes we win or even sometimes its like a Limbo. But now I am on a lot less meds, Partly because the mental health team are not doing anything but I am on the right track (I think so anyway) I do my self care, I have support and love, my pets, my OCD, nice & clean beautiful place, a wonderful man and my blogging! So if you think Dani is a lazy bitch …. no I’m not, I have been bullied by employers, neglected by services like MANY others. But I fill my day with tasks, studying, writing, cleaning & what ever I feel like my body can manage. And yes there are still consequences to that but I will not be defined by my illnesses’ & I will not be judged by you. Its 16th September 2018 not 16th September somewhere backwards in time when it was worse!

Fibromyalgia was firstly defined in 1990, updated “criteria” as they say in 2011. It is now recognised not as an impairment anymore but a disability.]

The term Fibromyalgia is from the Latin fibra (fiber) and the Greek words myo (muscle) and algos (pain). Funny eh? Its even noted in our History before we knew now what it was but it was somewhat acknowledged! Ands studied and will hopefully continue to studied! And help us!

Lol

    My Story & Journey with Fibro. When I was 18 going on 19 I had been diagnosed with Mental health issues & In and out of hospital with that and Gallstones with pancreatitis  …..