Not as I envisioned, but still not too bad.

About four years ago I had come up with this kind of design for a dandelion as a representation of pain. Which, this one gives a sense of loneliness, too (at least for me. My wife is beginning to show her anger and hatered towards me again. So it's definitely how I have been feeling today).

A campaign group will be targeting UK media outlets during global ME Awareness Day – calling out what it calls the corporate media’s systemic “mis-and-disinformation” relating to this chronic illness.

It comes amid growing concern that the same psychologisation certain medical professionals and the media have enacted towards myalgic encephalomyelitis (ME, also known as ME/CFS) patients is now also being used against people living with long Covid.

ME Awareness Day: what is this debilitating illness?

ME is a chronic illness that affects almost every system in people’s bodies – like the immune, nervous, digestive, and hormonal systems. Many of its symptoms majorly impact a patient’s day-to-day life – like cognitive impairment, profound and disabling fatigue, influenza-like symptoms, heart, lung, temperature, and blood pressure dysfunction, hypersensitivities, and digestive dysfunction.

However, the main symptom which sets ME aside from other illnesses is called post-exertional malaise (PEM), the NHS Scotland website says. Oddly, NHS England’s website makes no mention of this. PEM is a worsening of many, if not all, the body’s systems, as well as symptoms, after physical, mental, or emotional exertion.

Research has shown people with ME have a worse quality of life than many cancer patients, people living with type I diabetes, and stroke survivors.

Severe ME

In its worst form, people with severe or very severe ME often cannot eat or drink, are permanently bedbound or hospitalised, cannot sit or stand up, and are completely reliant on others for their care. However, crucially ME can kill people – and has.

In 2021, Maeve Boothby O’Neill died from very severe ME at the age of 27 after the NHS allegedly neglected her. Doctors denied her a feeding tube, and later denied total parenteral nutrition, which could have saved her life. An inquest into Maeve’s case is ongoing. Her father, journalist Sean O’Neill, wrote about his daughter’s story for the Times.

Much of the appalling treatment of people with ME is due to a cartel of medical professionals who have for decades claimed the illness is psychological.

Psychologising the physical

As the Canary’s Hannah Sharland recently wrote, there is:

a long global history of medical misogyny and trivialisation of the illness. Notably, one flawed 1970s study for instance, labelled a significant outbreak of the disease as hysteria.

This psychosomatic diagnosis, with sexist origins in tow, has persisted into the modern medical era. Of course, this also tracks, given that both historically and today, more women go on to develop the disease than men.

The medical establishment’s approach to ME/CFS is still mired in this same pernicious thinking. Largely, this pervasive psychologisation in recent years has come as a result of a persisting and highly controversial clinical study known as the PACE trial.

You can read more on the disease’s history here.

As Sharland also noted, medical professionals are also now using this ‘all in your head’ gaslighting against long Covid patients.

So, every year 12 May is global ME Awareness Day. This year, campaign group the Chronic Collaboration is set to up the ante when it comes to taking action.

Calling out the corporate media

The group’s founder Nicola Jeffery said in a statement about ME Awareness Day:

Patients have seen mainstream media repeatedly discredit and disregard any attempt to correct this – while at the same time continuing to platform medical professionals who are committed to the psychologisation of ME and Long Covid.

Enough is Enough.

The mainstream media has refused to report correctly on our chronic illness, so we have decided to do it for them.

On ME Awareness Day, the Chronic Collaboration will be reporting live from outside different media studios and offices at different times of the day – calling out their mis-and-disinformation and doing the corrections they should be doing for them.

It also wants people living with ME and long Covid to get involved. Jeffery said:

Whenever we do direct in person actions, we’re always really conscious of the fact that some of us are privileged to be able to even get out on the streets. So, we focus on how chronically ill people at home can get involved. For this demo, we want people to support online to get #MEAwarenessDay #ExposeMENow and #ExposeLongCovidNow trending on 12 May.

But we also want people to have a visible presence at locations we’ll visit. So we’re teaming up with campaign group Not Recovered UK to design roll up banners to plot outside media offices.

We want photos from people living with both ME and long Covid to put on them. People can email hello(at)thechroniccollaboration.com with a square photo (preferably 550×550 pixels), with their name, how long they’ve been sick for, & what they used to do, and we’ll add them to the roll up banners.

The Chronic Collaboration has set itself quite a challenge for ME Awareness Day. It will struggle to find a corporate media outlet that hasn’t contributed to the psychologisation of this very real and very debilitating condition.

ME Awareness Day: not the usual awareness-raising

As the Canary has documented, outlets like the Guardian and the Daily Mail, and broadcasters like the BBC have repeatedly contributed to the distress and gaslighting of people living with ME, and the regression of research into the illness.

For example, BBC ‘entertainment’ show Dragon’s Den was recently embroiled in controversy. It promoted a snake oil treatment for ME called Acu Seeds.

Meanwhile, the Guardian has repeatedly, published inflammatory articles pushing what is best described as junk science, without recourse.

Plus, the Daily Mail has defended members of the psych lobby – smearing chronically ill people in the process.

Until the idea that a physical illness can be ‘all in people’s heads’ is consigned to the dustbin of medical history, then we have to keep fighting back every time it rears its ugly head. Specifically, the Chronic Collaboration is correct to be targeting the corporate media within this. These outlets quite literally shape the views of much of the population.

So, as Jeffery summed up for this year’s ME Awareness Day:

Using the hashtags #ExposeMENow and #ExposeLongCovidNow we want our followers and supporters to let these media outlets know exactly what we think. Tag them in posts and tweets throughout the day, showing the reality of these chronic illnesses and correcting their lies. We want our voices to finally be heard.

This ME Awareness Day looks set to be a very disruptive one for the corporate media. What a shame that would be.

All the details of the Chronic Collaboration’s protest are in the image below:

Image

So I was prescribed 15mg MSContin on top of my 4 7.5mg Percocets daily. Oh my God. I had SO MANY SIDE EFFECTS. It made me violently ill. The first week I was actually happy because it worked very well for the pain but the longer I took the more it wrecked me.

Once the side effects hit I was puking like every 3 days with an incredibly sensitive stomach daily so I had to be careful even drinking water. Then I realized I hadn't shit in like 6 days. On Tuesday morning I ended up projectile vomiting all over my bathroom trying to make it to the toilet at 8am. That wasn't the first time it happened.

I decided at that moment I'm done with this pill. Can't keep putting myself through this.

I had my pain apt yesterday and he is gonna switch me to oxycontin because I have no side effects from Percocets. I'm either a no side effects or I'm dying side effects person. No in-between. I've always been like this.

So I just gave up on taking my morphine. I've been putting myself through withdrawals. Yesterday night I ended up just cutting one in half because I didn't think I'd be able to sleep and needed to work today and it helped enough I was able to sleep but still felt like shit and same with this morning. But, in that time frame I should've taken 3 but I only took a half so I did good. I also completely cleared out my system because of diarrhea due to withdrawals and I've never welcomed it so much in my life lmao.

But man, what a horrible experience. The side effects were awful. I'm still in withdrawals but it's better than taking that pill everyday. I'm hypermobile so I have a lot of muscular pain and this obviously is just exasperating it but I'll make it through. I get the new med this next Wednesday. I told him though if I get side effects I'm done with extended releases because I've had issues with multiple. He agreed and told me he'd just up my Percocets to 10mg if that happens.

What an awful 3 weeks though. I can't wait until this is over. I feel like I've been shit out of luck with issues this year so far and I just need to bring back some stability into my life (pun intended cause get it? Hypermobility?)

This is my first experience with withdrawals to this extent. I've experienced a bit before like 7 months ago when my pharmacy decided to wait until like 6pm to fill my meds and I get refilled when I'm out. I know it's just a glimpse of withdrawal but I can see where it's horrible

I went to pick up a package this morning and wanted to go to the store after and after I got the package I just mindlessly went back to my apartment and realized it. So then I went to the store and for whatever reason grabbed a Gatorade and opened it immediately and just zombie walked through the store for like 5 minutes drinking it before I realized what I was doing lol. I obv paid for it but I thought it was pretty funny. I haven't had such a "what the fuck am I doing" moment in quite a while

Seen it's been rather quiet here, I figure a new off the wall message might be helpful to break the silence, 😉

Anyway, on top of the many chronic pains, and the medicinally induced GERD thanks to the chronic pains and the paranoia over opioids (Yay, to being a guinea pig...👿 ). Now I get the old man stuff. A pulled muscle where I never knew a pulled muscle could be. Hairs, tickling the side of my nose...GROWING FROM INSIDE OF MY NOSE. Long hairs on the sides of my ears..."Look, Ma! I'm a linx" 🙄 .

Then there's the brain drain...Hoo boy, the number of times I almost cut myself or have to be extremely...I mean extremely careful when using my power saws...Yeeeeeeesh!

And, to make this circus even more fun, I really really should see a doctor...And I have decided to just say screw it and go into deep debt...Me thinks the medicinally induced GERD has gone into a new phase. The first year was extreme dizziness, difficulty breathing, plastic smelling sweat, and bad chest pains. 2nd year, it got better, and the dizziness wasn't that bad. Going on the third year now, and hoo boy, the discomfort I had in my belly just below my ribs (both sides) are now pains...Holy halibuts can they hurt. Then there's some new pains in the middle of my back (New? Maybe? I don't have a bloody clue...It's hard to remember what's old and what's new...🤨 ). That's not all, but that's not the embarrassing stuff...Also, the plastic smelling sweat has come back pretty bloody strong, too. (And there goes a sharp stabbing pain just under my ribs about three inches from my right-most side...Yeesh).

Oh yeah, then there's my lungs being used as a damn kidney...WTH is that all about? If I eat too much salt, tums, alka seltzer I'll hack sodium/salt out of my lungs. Too much sugar? That'll come hork up, too...Hell, I made some shrimp with some lemon juice and was hacking up citrus flavored phlegm...Holy Mother of Zeus...

On a good note, these new things have...erm...dulled? quieted? masked? the majority of my pains. So I've been able to cook & clean more. So...That's...um...well...nice...I guess. 😶 ...

Ok! That's my message for the day...Now wasn't that so much fun? "Not really, my belly hurts", 🤣 🤣 🤣 And now I'm hungry...again...I miss spicy food...😢 and I miss being able to out eat my entire family..."Long live high metabolism"...

The dishes are piling up. My apartment is a mess. I can't stand long enough to make a decent meal. My tasks are falling way behind at work. The physical therapy exercises just stopped helping one day. Ibuprofen makes my stomach cramp, pretty sure I have a hernia, or at least it's warning me it's close. Weed doesn't dull the pain anymore. I miss my good days.

It's caused backlash among the chronic illness community.

While Dragon's Den viewers were still buzzing over the addition of newest honorary dragon Gary Neville, social media was also discussing the devastating impact Thursday night's show had on the disability community.

ME (myalgic encephalomyelitis) is a debilitating chronic illness which causes life-changing fatigue, muscle and joint pain, brain fog and headaches to name but a few symptoms.

When a young entrepreneur popped up on Dragon's Den and claimed that a "personal healing journey" that included ear seeds had aided her recovery from ME within 12 months, most of us living with the condition rolled our eyes, as there's famously no scientific cure for the condition.

Some in the audience were intrigued, however, and the "Are you watching Dragons' Den?" messages started rolling in from friends and family.

What Giselle Boxer presented were needle-less acupuncture "ear seeds". Based on traditional Chinese medicine, acupuncture seeds trigger pressure points – and, from personal experience, acupuncture has certainly helped me temporarily sleep better.

That Giselle is confident that the seeds helped her is wonderful, but also anecdotal. To present her experience as some sort of 'cure', with no science to back it up, is concerning for those of us with ME, who are often not taken seriously by medical professionals or the general public.

In the end, Giselle was made an offer by all six Dragons. Whether intentionally or not, Dragon's Den has now left the door open to yet more ill-advised treatments.

ME is a complex disorder. A large proportion of us do not know what triggered the extreme fatigue that has led many of us to become wheelchair users and to become intolerant of light or noise, even of the touch of our loved ones.

Globally, funding into research is incredibly low despite ME, Chronic Fatigue Syndrome and similar condition Long Covid showing that sufferers have some of the lowest quality of life across all illnesses.

Despite this, some doctors in the UK are still suggesting dangerous treatments such as Graded Exercise Therapy, which has officially been taken out of the NICE guidelines due to it showing that it sets patients back further.

Many sufferers are sadly still faced with accusations that they are faking illness, being lazy or not trying hard enough.

If a tiny stick-on seed featured on Dragon's Den can cure everything, why are we not whacking them all over our pressure points and skipping off to do a full day's work followed by an ultra marathon?

Editorially, the BBC has made a grave decision in allowing a product to seem that, coupled with various wellness practises, it could somehow cure an illness, without scientific backing.

Would the BBC allow a show to go out which claimed jelly babies cured heart disease? Or taking up crochet would fix a broken leg?

What was shown on television for several minutes has collectively cost those of us with ME days and days worth of energy, filling in complaint forms and having unneeded conversations with people about the reality of living with our condition.

Dr Charles Shepard, Hon Medical Advisor for the ME Association said: "The way in which Dragons' Den has been used to promote an unproven treatment for ME/CFS has, not surprisingly, caused a great deal of upset and concern in the ME patient community.

"People with ME/CFS are fed up with the way in which products like this are regularly being promoted when there is no sound evidence from proper placebo-controlled clinical trials to confirm that they are safe and effective.

"These sort of expensive commercial products and devices should not be promoted to very vulnerable sick people until they have been properly assessed for safety and efficacy in clinical trials – in exactly the same way that drug treatments are."

In response to this story, a BBC spokesperson said: "Dragons' Den features products from entrepreneurs and is not an endorsement of them. Dragons' Den shows real businesses pitching to investors to lift the lid on what happens in the business world. This episode features an entrepreneur sharing their own, personal experience that led to a business creation."

Dragons' Den has showcased some incredible businesses designed to make disabled people's lives easier: from all-terrain wheelchairs by AdaptAbility to adaptive clothing company Unhidden.

Getting disability aids onto the screens of millions of people is important to those of us who use them; visibility and societal acceptance are key ways to change things for the better.

However, with such a large audience comes responsibility for BBC Studios, makers of Dragons' Den, and for the dragons themselves to responsibly question contestants on scientific evidence and data sources.

ME patients don't have to prove their illness to anyone. But to present one person's journey unchallenged has a tangible, damaging impact on others.

I'm already at a pain mgt clinic but I've never seen a doctor there so I decided to checkout another one. So I asked my neurologist to refer me one and I had the appointment with them today.

They're great and I would actually talk to doctors there which I like but they have a MME requirement which is much lower than the CDC recommend max which is 90MME. This pain clinic has a max of 50MME.

Not only that, but Colorado protects doctors here from lawsuits and says it's okay to go over 90 mme if needed

I currently take 40mg hydrocodone a day so there's only room with 10mg more if I switch to this clinic.

That really sucks because he told me they would rotate meds for tolerance reasons so they would switch me to oxycodone then a few months later morphine and so on so tolerance doesn't build for one medication. But that 50mme is tough because for me to be able to do basic activities and be active in life I'm going to need more than that.

It was so nice to be able to talk to a doctor who understands opiates without feeling stigmatized while asking my questions and saying my thoughts and experiences with certain pills and how one has helped my pain more and etc. compared to talking to a young NP that doesn't understand.

It's tough because it seemed like a great clinic but that limit may be a deal breaker.

I really hate chronic pain lol, obviously. Today's been hard though. Last week I met with a new neuromuscular neurologist and she told me bad news. She disagrees with my previous neurologist on the CIDP diagnoses and thinks that I have an extreme case of small fiber neuropathy.

I can't stand in one spot for more than a few minutes without my legs starting to shake or walk up or down hills. Eventually they'll give out and just tremor. She doesn't think I'll get em normal again. She said I could get some functionality back but that's it. That's also with nonstop water therapy and normal physical therapy.

Same with pain. She thinks I'll be on pain meds forever. Not only that, but the nerve pain in my legs and low spine pain hasn't gone away since the blood patch 4 months ago. I got 500mg methylprednisolone infusions for 3 days a month ago and that helped a lot and I was hoping it would go away but it didn't. Still can't have my legs in certain positions. I got acupuncture today and she did cupping on my back and did it on my hips and lumbar spine and that general area and it made it flare up. Had nerve pain in my legs the entire time. I just got a lumbar pillow and can't even use it because it makes my low spine hurt and nerve pain in my legs.

I got wheelchair assistance for the flight home for Thanksgiving and that was really tough to do mentally. The flight home also caused a lot of pain. Not only that, but I got into a huge fight with my mom and brother because they can't seem to comprehend the fact that I'm not gonna be in a jolly mood when I'm in a lot of pain.

What the new neurologist told me sucked. It has a lot of implications. Been a mentally rough week and a half. I try not to think about my future but I have been. Idk if I'll ever be able to get into a relationship with how my life is currently. I'm just exhausted. All of this is just too much. I wish I'd wake up one day and it would all be gone and I could live the life I had a year and a half ago

I'm a newcomer here, but I would like to raise awareness for people who suffer from severe trauma. The nights of little to no sleep. The tears that are wept for something that happened 15 years ago like it just happened to you. Just here to let you know that you're not alone, and no matter what pain you feel, someone somewhere can help

I've always read mixed things about them and for some reason I always thought they were thousands of dollars. Finally decided to look them up and to my surprise they're not lol. Don't ask how I got that in my head.

I went ahead and ordered one to see if it helps. A lot of my pain is muscular and I will have muscles that will seize up for basically days. Even if this can relieve some of it, I'll be happy.

Any have experiences with them?

Flying home for Thanksgiving will be the first time I've flown since things got really bad. I'm 26 and I set up wheelchair service for the airport. Never in my life did I think so much could go wrong so fast.

I'm scared to see my brother and mom. They haven't seen me since April and stuff just has gotten worse. The pain from flying is going to be so bad. 3 hours in a plane seat. Not only that but parking, the bus ride to the airport, even being on the wheel chair will be so exhausting. I'm going to be in so much pain. It's really hard to handle that this is happening.

When I originally went to my pain management doctor she said her goal is to get her patients to participate in life. But due to my age she is reluctant. I take 30mg of hydrocodone a day and 50mg of tapentadol xr and it allows me to do chores some days. Some days I can shower. I know I metabolize oxycodone way better than hydrocodone from when I got it at hospitals. I don't know how but I need to get her to understand I'm miserable. I've tried.

I'm just having a really hard day today. I'm so scared of flying home and back. I'm scared of my future. I don't know if I'll get my leg function back to how it was. I don't know if the IVIG infusions will help. There are so many unknowns and I'm stuck. My pain management doctor could help me more but she doesn't. I'm grateful for what I have but it's not enough.

In just over a year my entire life flipped upside down. I moved to Denver to hike, mountain bike, snowboard, play sports, etc. I wanted a new life and now I can't do any of that. I try to not think about the future and just go day by day. I don't know. Simple things are so hard for me. I was so active, I did so many physical activities. I just walked from my apartment to the amazon locker to pick up a package which is a 3 minute walk each way and that hurt and got worse.

I don't know how I'm going to live the rest of my life like this if the IVIG doesn't work and my pain management keeps on being reluctant on my pain meds. I can't live life like this. I'm so embarrassed. Why did this happen to me. Every simple thing is so hard like unloading the dishwasher or laundry. I keep my clothes in the dryer and just take them out as I need them instead of folding because I dread it. It can cause so much pain. I just don't understand. I can get complete paralysis of my legs just by walking up or down a small hill where they seize uncontrollably. Or even laying on my back and lifting them up will do it.

I'm having such a hard time today. Everything I once knew and did is gone. My entire life. It's even affected my lungs. Some days I simply can never catchy breathe. It's hard to breathe some times.

I just don't know if I'll be able to hold it together when I see my mom. I've barely been holding it together recently in general. So much has gone wrong and it makes no sense. I just want to go outside. I want to go make new friends. But I can't. It's so embarrassing that this is happening to me. I just don't get it. Some days i can barely even watch TV it's so bad. I just want to be normal again. I want to have my life back but I don't know if I ever will

During my apt Wednesday with my neurologist he mentioned starting me on IVIG infusions. He also referred me to a rheumatologist and I thought I had seen him first but I don't. He wants to get me going ASAP to get my insurance to accept it along with scheduling cause that can take a bit.

Im excited. The solumedrol 500mg infusions are starting to kick in on the 3rd day. I actually woke up in the least amount of pain than I have in a long time. I've only gotten mehtylprednisone once prior in March and other than that only Prednisone. The original methylprednisone helped me but the normal Prednisone never did with my normal pain. Today was my last day of it.

I'm not sure what that implies that mehtylprednisone helps my entire body pain but normal Prednisone doesn't but I'm sure it means something! Maybe it's simply the dosage. Because originally I got 125mg of methylprednisone and the Prednisone pills were only 40. This methylprednisone is 500mg. So maybe my body just requires a high dose to help it. It's definitely helping my lower spine and nerve pain in my legs thank God.

Anyway, I'm excited for the IVIG infusions. I hope they help. I also see a neuromuscular neurologist day before Thanksgiving, rheumo my neurologist referred me to on the 13th of December, and my PCP referred me to the university of Colorado for a rheumatologist. So I still am going to see a lot of people coming up but I hope that the IVIG does something.

Also, something that I find interesting with this mehtylprednisone is that I feel my body weight on my muscles. Idk if muscles have gone completely numb and I never noticed but yesterday when I woke up it's like I could actually feel my body weight on my legs and upper body. Previously I realized I felt weightless and it was super weird. Woke up again this morning and the same thing. Like it was hard to walk and I could feel my muscles contracting. I have a rubber tape thing my PT gave me for arm workouts and whenever I used that I could not feel any type of burn in my muscles. I felt nothing. Although, I still get a lot of muscular pain but everything is technically "nerve" pain. That could be due to some muscles not working so other muscles have to compensate so there's an imbalance from my EMG results.

So he has officially gave me a diagnoses of CIDP

Wow. I have never had someone actually truly believe me and give me something I need right away. First off I should say my neurologist is convinced I have CIDP and my reactions from my spinal tap and blood patch 3 months could be a cause to my reaction

So I went yesterday to my neurologist to go over my muscle biopsy report along with my nerve pain from my blood patch. My muscle biopsy shows denervation a long with other tests supporting CIDP.

So, when I told my neurologist about my nerve pain he thinks it could be my body just reacting poorly to any sort of trauma. Not only that, but where I got my muscle biopsy is still a tiny bit swollen 6 weeks later which he thinks is also a reaction of my body being in overdrive. His clinic is connected to a infusion clinic. They work together. So, he told me he is sending in an emergency solumedrol 500mg infusion for right then and there at the apt so I got it then for an hour, then I'm going in today, and tomorrow for more infusions.

I should feel amazing about this but you know, pain messes with your mind and I am happy but it doesn't last long. Regardless, my neurologist truly believes me, didn't question it, and acted right away. I'm really hoping this helps because my nerve pain and low back pain can be unbearable

So he basically put me on the emergency arachnoiditis protocol.

I'm getting an MRI on Sunday to see what damage has been done to my lumbar spine from a blood patch. Long story short, got lumbar puncture, CSF leak, blood patch = lumbar electric shocks + muscles around lumbar cramping + from soles of feet to lumbar spine feeling like I'm being stung by bees + sensation of ants crawling all over legs + feeling of something swollen in my lower back.

Like, I know something is really wrong with my lumbar spine. The dude who did my blood patch royally fucked up because during it I got bad nerve pain and it hasn't gone away 2 1/2 months later, got worse. Nerve pain and spine stuff isn't anything to mess around with especially when it's combined. I want to know what's wrong but at the same time I don't. Because, if I find out what's wrong then I can learn whether it's treatable or not (I doubt this) along with getting a diagnoses and then I can learn how bad all my symptoms will progress + what else is to come.

My neurologist thinks I still have spinal fluid leaking, inflammation, and a mass forming in my spine. So in short, arachnoiditis. No bueno! It don't feel good. What upsets me the most about this is what if we can get my other pain figured out but now I'm left with permanent damage in my spine? I've gotten Prednisone twice for this and it's helped both times.

Do you think I can go to the store and upgrade or buy a new spine? Sounds good to me!

The pain medication shortage needs to be stopped. They are attacking the wrong people to act like they are fighting the 'opioid epidemic'. I hope everyone has been able to get their filled on time if you are even able to get them since doctors are terrified to prescribe them now a days.

I’m hoping this muscle biopsy will give me some answers. The emg I had showed muscle and nerve not working correctly in my thigh we haven’t found anything that can tell us why and what damage was done during my period of acute inflammation. Hopefully this can give us a hint as to what’s up.

When I woke up from the anesthesia I came to and I was fist bumping every nurse in the room 😂 They said I won the award for the funniest wake up of the week. For some reason I told a nurse that had nothing to do with my case that I loved her while she was leaving lmao

About 2 months ago was when I got my blood patch after my lumbar puncture a week and a half prior.

For a week after my BP I had bad nerve pain in my legs. I was on prednisone for a week after and it helped it subside until now.

So about 2 months after the blood patch my nerve pain in my legs has come back. It took a month and a half after my blood patch for my csf leak symptoms to finally go away.

It’s like I just can’t win. The nerve pain in my legs has come back with a vengeance. It’s the worst when I’m laying down. It’s like someone is trying to rip off my legs from my the soles of my feet to my low back. It’s like a bad stinging pain that you just want to stop because it’s so uncomfortable. Not only that, but it’ll feel like bugs are crawling all over my legs.

It started off small but then has got worse every single day to where I can’t even sit comfortably anymore without nerve pain. Only been a week since it came back and it’s hit hard. My lower back where I got my blood patch has also gotten sensitive and hurts.

Not only that, but just a few days ago I started to get headaches again while standing up. I was like ahh this has to just be a coincidence no way I’m leaking again. Well, it hasn’t stopped. I am also getting nauseas.

Nerve pain is the absolute worst because you know it can grow to absolutely ruin your life and there’s no stopping point for it. I don’t know what to do anymore. I’m obviously going to talk to my doctors but like Jesus Christ. I can’t deal with damage from my lumbar puncture and blood patch.

What I don’t understand is that gabapentin doesn’t help this nerve pain at all, but my Hydrocodone does. Gabapentin helps my other nerve pain but does zip for this. I don’t know why Hydrocodone would help this situation. Ahhhhhhh I just want to scream it’s never ending

Because in the 100°s during the day and 60°s or 70°s at night really sucks for me. I hope you all are having a "good day" (whatever that means for you - maybe no extra painkillers is a good day)

(No real diagnosis, just hypermobility, chronic back/SI joint/hip pain for the past decade and extreme weather changes hurt like a b!tch)

Thanks for listening/reading.

I believe my chronic pain is all from TMJ and bad posture. When I do exercises to fix my posture I get pain from my TMJ down to really tight pelvis and thighs. So everything in between also. I’ve been stuck trying to figure out what to do to help myself. And of course, my spinal tap came back clean and yet I’m still dealing with complications from it.

I’m going to a physical therapy session with someone who does posture restoration and I’m really hoping it can help. I’ve found tests they do on YouTube to figure out what exercises are best for you and I struggle with all of them that I’ve found meaning my body is doing exactly what it would be doing due to bad posture and pelvis alignment issues.

It gives me hope that maybe I can start activating the muscles that aren’t working and hopefully in turn start to feel better. Everything I’ve seen on YouTube about them is exactly what I’m feeling. They keep in mind dental/jaw issues with all of this.

I know it’s a low chance someone here has heard of this or has chronic pain due to TMJ and posture issues but I’m curious

So I posted here after I got my spinal tap a few weeks back and I really wish I never got it. All it has done is cause more issues.

I had a bunch of hip and pelvis pain after it but I’m not gonna focus on that for this. My spine ended up not healing itself so for a week and a half before the blood patch I was experiencing the worst headache that I knew could actually exist, draining sinuses, eye pain, shoulder pain, more nerve pain into my shoulders and arms, and this raw indescribable pain in the back of my neck and between my shoulders that felt like my spine was being crushed. I was so uncomfortable. Having spinal fluid leaking makes your entire body feel so completely abnormal and wrong. I don’t how else I could describe it. The only good that came out of it was that I was sent to the hospital for an emergency mri by my neurologist due to symptoms of a hematoma. That’s not the good part, I had to spend the night so the next day I talked to a lot of people and I was talking to this woman there and she really wants me to see a neurologist at that hospital so I was able to get a referral to see them from my paint mgt doc. My current neurologist is currently moving to a new clinic but its too far away from me.

So I got a blood patch just over a week ago and that came with it’s own issues. Before the dude started he told me that if I feel any nerve pain in my hips or legs to tell him because it can cause permanent damage. I felt it, bad. We had to let the blood settle 2 times because it came on so I told him. As he was pushing the blood in I could feel the pressure build up in my spine so I could feel how fast he was going. After we waited the second time I gave him the go ahead. I honestly think he messed up and pushed too fast because all of a sudden I felt a ton of pressure build up and then the nerve pain hit me like a ton of bricks. It was so bad. For 3 days straight I had non stop nerve pain. The only wait I can describe it is as if some is constantly pulling on your leg really hard and stretching your nerves.

It has calmed down since then but it’s not gone. If I make a wrong movement or just am up for too long my hips and legs down to the bottom of my feet will start hurting. Not only that but the blood patch didn’t even fully work. I’m a lot better off but my sinuses are still draining a bit, I still get a headache from being up, eye pain, shoulder pain, still worse nerve pain in chest shoulders and arms, and between the shoulder and back of the neck spine pain is still there constantly. Don’t get me wrong, it’s better, but it’s not gone. Not only that but around the area where I got the blood patch and spinal tap will start hurting if I move too much. All my muscles in my back are also extra tight.

This whole thing just caused so many issues it’s so frustrating. I really wish I never got it. It’s just so frustrating because such a “simple” procedure has caused so many damn things to go wrong and I’m just straight up not having a good time.

The back of neck pain and between the shoulder blade pain is so incredibly annoying. Well actually all of it is but that part is what bothers me the most because holding my head up is just such a task. Not to mention I already have a bulging disc back there so I can only imagine less spinal fluid is only making it worse.

Editing this real quick to add something. So I get full body twitches since my issues started but only when I relax. For example when I’m in bed my arm, hip, legs, etc. will twitch. It’s a big twitch too, not a small one. It can move my entire body. Here’s the odd part that I have no idea what it means, before my blood patch my body completely stopped twitching. I had 0 twitches for a week. As soon as I got the blood patch and got home and laid down my body started to twitch again. I have no idea what it means but it’s something I noticed

I hurt. I hurt all the the fucking time. My belly hurts. I'm reducing my drinking but it really sucks. The withdrawals suck real bad.

Lost my colon to U.C. Have a bag on my belly.

I have to move my family out of the south. I have to be physically able to do it. We have to get out.

If I get them out maybe I they'll be able to live happy.

I just want to die. I want the pain to stop. I don't let my people know. They can't do it without me.

I'm tired. I hurt all the time. I'm tired of hurting. I could turn it off, but I don't for now. I'm tired of the pain. I love them and they need me. I just want to make sure they're in a good place, away from here. Then I can finish it.

[Chorus]
Ah well, everybody's heard about the GERD.
G-G-G-GERD, a GERD, GERD, GERD is the word.
Ah well, a GERD, GERD, GERD, the GERD is the word.

Anyway, anyone else sing songs, change words to songs about your ailments?

I have this one, and I had written a whole one for Metallica's Sanitarium called Chronic Pain (But deleted it in a fit of rage about 5 years ago). As well as one for the Jabberwocky poem...I think I can remember some of it.

T'was achy in the taichy joints.
Did wryde and balder in the Inge.
...
...

Beware the Crackerback, my son.
The bones that creak, the joints that crack
Beware the throbthrob knee, and shun
...

I noticed I’m mostly posting in here and would like to know how you all are doing.

I ended up being sent to the hospital by the place that did my spinal tap due to complications so it’s been hectic and very painful for me.

Very stressed and tired and just want to get back to baseline pain.

How’s your week been? What have you done this week that challenged you? Do you have anything you are worried about coming up? Having pain better or worse than usual?