u/Cute_Swimming9940

Hey all,

Does anyone have a recommendation for a Peterborough based physiotherapist that has a good amount of experiance with Hypermobility, Ehlers Danlos, Fibromyalgia?

The NHS ones are absolutely shite, (when you can actually get an appointment) and only treat one issue at a time, I feel like they're more for sports injuries or surgery recovery around here, and when your chronically ill you always have multiple areas hurting. I need someone who can basically put two and two together and not only focus on one joint at a time or it's going to take me 10 years to get everything covered.

Thanks in advance.

Hey guys,

I'm not diagnosed with MCAS, however after looking into it, I'm pretty sure it's what's going on at the moment. I'm being investigated for EDS, I have fibromyalgia diagnosed atm (not even sure if it's the right diagnosis anymore).

Anyway, long story short I went on pregabalin for pain management and it made me go off on one. My body had a bad reaction (mild anaphylaxis, bad bleeding from back end and spotting for over a month), and a bucket load of anxiety like I've never felt it before. I quit it following Dr's recommendations but I've felt awful since. I keep getting a feeling of impending doom I can't get rid of (my hearts fine), things like yoga and music and mindfullness ​doesn't really help. I'm a medical cannabis patient but since the pregabalin I can't tolerate it as well and too much makes me feel worse (which I'm so freaking annoyed about because cannabis has been great for me for the last 8 years at least, I wish I never tried the pregabalin)

Only thing that helps is antihistamines (lotradine, fenofexadine)

What else can I do to feel better on my own?

And how do you go about getting diagnosed and treated in the UK for it? Half the Dr's I work with done even know what fibromyalgia is so I doubt they have a clue about MCAS. I'm already trying to get a referral to rheumatology for the EDS but idk if they're gonna help realistically, apparently they don't see it as their jurisdiction.

I just can't keep feeling so awful all the time, I'm really struggling here!

TIA

(current conditions, Asthma, fibromyalgia, hypermobility, audhd, suggested EDS + dysoautomonia)

Mate🫠

The way I look at it, if you eat meat you don't have a leg to stand on in the morality side of things. How you kill the animal to eat it doesn't matter, it's the same fucking dead thing on your plate the difference is one of you said a prayer for it, tied it up and cut its throat, the other one of you got it wet, electrocuted it, probably but a bolt in its brain too, then it gets packaged and sent off to shops.

Either way it's a horrible way for anything to go. But all these fucking white people (coming from a white person) that are like "I won't eat halal meat", let's be brutally honest here it has everything with you hating Islam and fuck all to do with you actually caring about what happens to the animal. If you didn't know it was halal, you wouldn't be able to tell.

You can't pick and choose where you decide to have a moral compass if you eat meat, shut the f up and eat your carcass.

Idiots🤦🏼

Seriously, I'm getting to my wits end with the compliance woman at the moment. She sounds like a mardy 20 year old who can't be arsed to do her job and is holding complaince up for bs that has nothing to do with the property purchase.

I've had to chase constantly, and when I do get a response she can't even be bothered to reply to what I actually asked for. ​All my giftors have said she's come over very unprofessional and like she's not reading the emails. I don't even think she's a qualified solicitor I think she's just an admin assistant. I've just seen their Google reviews and sounds like she's ruffled a few people's feathers.

Did anyone else deal with this?

I'm getting nervous now, as it's a SO you only get 28 days to get everything sorted. I've already had two blips in the journey where I thought I lost the flat, I'm not going down at the last hurdle because some kid can read her freaking emails or answer her phone.

Wtf am I paying almost 2k for. I'm doing all the work🫩

I got diagnosed with Fibromyalgia a few years back, and in the UK they do something called a work capability assessment when your poorly and off work for over a few months. My assessment concluded I don't have the capability to work or volunteer, so I got put into a LCWRA category, which is disability pay for people with long term or terminal illness which aren't going to improve with time. I also receive universal credit and personal independence payment. So, I'm extremely lucky, I have the government paying support for me. But at the same time, I feel angry that I have to say I feel lucky because I've paid my taxes to support the benefits system I now unfortunately need to use. I've paid more in NI than I've made in 2 years on 3 different types of benefits.

But I just still feel so shit about it?

Like I worked from 16, I trained and had jobs in London as a makeup artist from 17, I worked as a vet nurse in my early 20s, a software engineer in my mid. A supervisor just before my health starting getting bad. I even had two jobs a few times. I was smart, and capable and then I developed fucking Ptsd from a stupid relationship with a girl I wish I'd never met. I've never got over it, this was 9 years ago now, I didn't even know it was ptsd until recently when I finally opened out about it in therapy. I've only dated once since, about 3 years ago and that one was a lying cow and had a wife behind my back. That lead onto really bad depression, and I thought I had a personality disorder or something so I went to the Dr's, but I actually had undiagnosed Autism and ADHD.

I've now developed dysoautomonia, and some autoimmune shit they can't figure out what it is, as well as now being told I have hypermobility, probably EDS. I've just had a massive allergic reaction to pain meds (pregabalin) and now that's started MCAS.

Like it's allot to deal with, but I still don't feel like disabled enough? I don't know how to explain it.

I'm scared to do anything to try to get better either, because one, literally everything seems to be making me poorly. Two, pip are fucking ridiculous, I had to take them to tribunal in the end which took 16 months, just to get someone to actually read my application and realise how poorly I am. Immediately got standard for both (I could have got max for mobility but I was scared they'd take my car off me or something. And embarrassed to admit at 29 I can barely walk MCAS on bad days). Then you see all these news articles about people "scamming pip" (and yeah one or two of them do, but some are just doing their physio, Dr recommended treatment which is usually exercise) and then pips like well you can swim for 15 minutes so you can't be that disabled can you. They don't think about the fact you probably can't do anything else that day, including making a meal because your too tired and sore now. Three, if I loose my benefits, I loose my treatments because I'm having to pay privately for allot of my meds, physio, which makes everything worse and I'm already struggling on treatment. I wouldn't be able to financially support myself without the benefits because I can't handle working full time. Four, if I lost any of my benefits, I'd loose my appartment, because I wouldn't be able to afford the rent. I'm also terrified that because I'm moving out they'll (pip) be like you can't be that bad, but like my mums still gonna come round whilst I bathe and stuff to make sure I don't get stuck in the tub. The only reason I'm moving out is because my family are negatively impacting my health (constant drama, unsolved family issues, lots of health issues and scares, loud + chaotic environment) and I really think having my own place and getting some independence back could really improve my conditions + my social life.

Like I'm so stressed, I've tried the holistic approach, going to swim and going to yoga, mindfulness, eat better, cut out caffeine, reduce sugar intake but it doesn't work! I feel more stressed because I'm worried about being seen out and not believed I'm unwell, I'm stressed about money all the time. I can't form relationships because of the Ptsd and also, who's gonna want to sign up for all this crap. I've got no friends anymore because I barely leave the house and I was just horrible when I was in the thick of it. I'm waiting for therapy at the moment as I know I need it, but unfortunately the request I made for EMDR was denied and I've been sent back to counciling for "anxiety" when it's not fucking anxiety.

Like what the fuck Fibro, how has something dominated my life like this?

Out of life I just want a kind wife, a few nice friends, a nice safe home, to do something meaningful with myself/my time. I want a future that isn't anything like what I've had to deal with so far, and I want normal people to stop acting like I'm privileged because I don't work anymore.

Please say I'm not the only one?

If you made it to the end, thanks for your patience and sorry😂 I just needed to get this out to people who would actually understand.

29, F, 5ft3, 83kg, long term vegetarian, on medical cannabis.

(First and foremost, medical cannabis is legal in the UK, and has been since 2018, CBD is not the same thing. I'm sick of explaining this to Dr's and they put "on CBD". I have THC and CBD, yes THC is legal if prescribed. No it does not get me "high", yes the difference matters as thc has more drug interactions than cbd.)

I have Fibromyalgia, asthma, hypermobility, Adhd, Autism. The autism doesn't really cause a medical issue, the adhd causes bad mood swings, irritability, hyperactivity and lots of memory issues - especially before my cycle. Ive also been diagnosed as hypermobile, and need to see a rheumatologist to make sure I don't have a connective tissue disorder (GP suggested could be EDS). Family history of SLE, but my ANA is always normal. My mums Ana was negative until was until her lupus made her go deaf. So they're not ruling that out either, but the bloods aren't showing it. Family history or cardiac issues, cardiomyapthy, bypasses. I've been cleared by cardiology with just a small murmur, not worried about it.

Here's the odd bit, ​recently, I went to the Dr's about going through the pain clinic to help with my fibromyalgia, I struggle with pain and fatigue pretty badly - I haven't been able to work for 2 years since the bad flare that got me diagnosed. But the worst part is the cognitive issues, I can't remember things, I feel dazed allot, dissociated. For my age, it's awful. The medical cannabis has really helped the cognitive side of things, and ironically it makes my memory better and my head clearer. However as it's rarely given on the NHS, its costing me £300-£400 a month through private specialists. I talked to the Dr's about this, and we decided to try pregabalin (I've tried all the ssris, they don't work or do anything but make me feel anxious, pack weight on, and citalopram made me wanna kill myself, and I think suicide is bullshit. This is why I didn't start on amytryptline and don't want to try duloxetine, I don't want anything that says it deals with "anxiety" because they make me feel awful)

On the pregabalin, at first I had issues with extreme dryness in my throat, then reduced breathing, a tight feeling in my throat like a toddler shoved a fist down my windpipe, needing to use asthma steroid inhaler for relief too often, a feeling of dread but no brain anxiety, and at one point ​a slightly blue tongue. ​​Obviously not good, I rang and was told to discontinue use immediately as it was a allergic reaction, and it's taken over a week to calm down. I ended up in A&E two days after stopping pregabalin, bleeding badly out of my backside. I lost allot of blood, (about half a bedpan) they were talking about a transfusion, but luckily my hemoglobin was stable enough not to need it. Even since then, I've felt so anxious (but body/chemical, not mental. I know the difference, I've had allot of therapy as I was originally told I "just had anxiety" for 10 years, when I had allot of other things wrong they were just fobbing me off as a dramatic woman, as they do). It's worse after eating, but immediately after eating. Antihistamines help, as does gavascon to help with the bad acid I've been getting since. ​

Bloods: my bloods usually come back normal except for high white cell count, high mean platelet volume, borderline high C3 but still within normal range. I've had a vitamin D deficiency a few times (even though I take daily supplements) and a selenium deficiency. IgA can be high sometimes, IgE was until I removed food intolerances. No evidence of chrons they can see.

Other good to knows: I have irregular periods, always have had. They're painful, sometimes I miss a month, sometimes I bleed for 2 days, stop, then bleed again a day or two later. I very occasionally get spotting, usually around ovulation. Since starting on pregabalin, I've been spotting everyday. Not due on my period (only know by where my cervix is, as it's so irregular). I've had bloods to check my hormones and was told they're fine. Smear tests come back clear. Never had kids, don't want them. ​I've always had some dryness, sex was usually uncomfortable (and I sleep with women so, fingers are less aggressive than a penis ramming into you), but I'd always be in pain the next day. Regardless of how gentle my partner was, how much lubricant used etc.

I have a history of chest infections, pneumonia and I've had sepsis once or twice with the pneumonia.

Ive had bowel bleeds before, but a full colonoscopy showed clear. They're booking another one, sigmoidoscopy and a internal vaginal ultrasound to find out where this bleed has come from.

Most recently, I've had (by an actual Dr not self diagnosed from social media) EDS, MCAS suggested or SLE, potential arthritis (non autoimmune), someone thought gout at one point but since I don't drink or eat meat that was quickly put under the rug.

Also random, but I don't react well to anistetic - had a really bad reaction to dental work last year and an infection for 3 or 4 months as no one would take responsibility and treat me. I wake up swinging if I need putting under for a surgical procedure, I don't know why. Ive been like it since I was a kid. They had to use adult doses to knock me out from about 8 or 9.

At this point, I'm scared to do anything. I'm supposed to be starting adhd meds soon as I've just got the diagnosis after 4 years on the waiting list, and I'm petrified it's gonna do what the pregabalin did.

If I came to you, with all this, what would you think? What would your steps be? I'd rather not fork out £300 per appointment to see a private Dr if I don't have to, but unfortunately the good Dr I've been working with is a locum, and when he goes I go back to the guy that didn't even know what fibromyalgia was 20 minutes before he diagnosed me with it.

TIA

I've read so many of Gerri's books, and I love the way she writes a good masc.

Who is your favourite and why?

I loved Tori from Hunters Way and Mason Cooper from Gillette Park. Tori, because she's misunderstood, self assured, intelligent and proactive, I also found it super cute she had a bashful side (like putting her top on to cover her abs up infront of Sam) and was thrilled when she shot Sam's abusers without a second though. That sht was attractive. I love Mason because she's kind, open minded, proactive at her job and protective of Grace even though she's scared of her for the first quarter of the book(😂) and so respectful. What a woman🫠

What about you guys?

Hey guys,

So I have had fibro diagnosed for a few years, I also have ADHD, Autism, ptsd, asthma, hypermobility. We (gp and i) also believe I have either SLE (which runs in the family) or if it's not autoimmune Dr's have suggested EDS / connective tissue disorder. (I know, it's allot of shit. No, I promise I'm not a 20 year old who self diagnosed from tiktok. I'm a 30 year old stubborn mare who doesn't even like to admit when I've got period pain).

Long story short, I've only ever used medical cannabis (which is legal in the UK) to manage my conditions as its something that works across the board without negative side effects. However with the asthma, sometimes the mc vape (which you legally have to use, it can't be smoked) irritates me and I have to give it a rest for a few days or so. Because MC is basically impossible to get on the NHS, I buy from a private clinic which costs me £300pm, not great for someone who can't work. So I asked the Dr's about going through to pain clinic to find something I could use along side and reduce the cost of my private script - my recent locom Dr went through my history, prescribed me meds himself, which was pregabalin. (I said no to amytryptline due to the side effects and warnings from my family who are all medical - also, did not get on well with SSRI's, so didn't want something that was more "mental health focused").

Did not get on well with pregabalin at all. Day one was actually okay, throat tickle but I felt chill, then day two the extreme dryness and throat tightness started. Over a few days I basically realised I was struggling to breathe, using my asthma steroid inhaler and antihistamines too often because I needed relief, my throat felt tight - like a globus feeling but not anxiety related, like a toddler has stuck their first down my throat. I felt awfully "anxious" but body anxious, not mind. Jittery, impending doom but mind clear. None of the tools I've learn over years and years of therapy worked to ground myself. I had night sweats, insomnia. Also made me start spotting (am female) which hasn't stopped since the first day I took it. I rang Dr's and they advised it was likely an allergic reaction and to stop immediately, which I did about 5/6 days ago.

Fast forward maybe two days after stopping pregabalin, I'm rushed into A&E, literally shooting black diahorrea and bright red blood out of my backside. Lost maybe just less than half a pint, they were talking about a blood transfusion. Luckily wasn't needed. No obvious reasons as to why this happened, now I've got to have another colonoscopy, a internal ultrasound and god knows what else to find out what the hell happened.

Luckily, all that scary stuff seems to have stopped within a day, but the body anxiety is really here. I haven't felt this awful and anxious since I was like 21. Wake up and it's there, I've also noticed every time I eat since this episode, I get what feels like a cortisol dump and get all hot, feel nauseous and dizzy, jittery almost delusional for about 2 minutes then I'm back to okay. This globus feeling won't fully go away and it's peeing me off big time.

I know it's probably a stab in the dark, but anyone experianced anything similar?

I've just brought a appartment, and I'm feeling scared to move out of my family home incase my health plummets whilst I'm there on my own. It's some scary sh*t! I've arranged counciling as I'm aware that's a terrifying thing to happen to someone of my age, and my reaction is valid - but the best people to ask are usually the ones with life experiance not the ones with a phd.

TIA