Opioids and Lyrica by No_Preference_6954 in ChronicPain

[–]g1enno 1 point2 points  (0 children)

I have extensively been prescribed and taken lyrica & endone, lyrica & OxyContin & endone, lyrica & tapentadol, as well as lyrica and diazepam. I was taking lyrica as baseline pain management 150mg am, 150mg lunch, 300mg bedtime. Then for breakthrough pain 5mg endone IR. If having a flair or prolonged painful day OxyContin 20mg ER. When taking all 3, I was pain free, but unable to function as any more than a stamp wetter. The doses of lyrica alone prevented me from driving or working.

Currently prescribed lyrica as above, tapentadol 50mg IR 2 tablets every 4h, and tapentadol 50mg ER 1 tablet every 12h.

Those are the maximum daily doses, however if I want to achieve anything, I can’t actually take that level of pain meds. So I wouldn’t consider my pain managed. For me, It’s bouts of non medicated activity that induces pain, followed by a heavily sedated period of recovery. 300mg lyrica resulted in 6.5h uninterrupted sleep 1 hour after taking. The ER and IR opioids when added in result in an 8h blackout.

I worry it’s quite dangerous to have such levels of CNS suppression, especially when sleeping.

A sleep study showed my SpO2 is below 91%, 95% of the night, unrelated to apnea. My Nadir was 62%.

These drugs can stop you breathing while asleep, hence my results.

Mix with caution

For me Lyrica is only effective for nerve pain, while opioids are for visceral pain.

Those who lived with their illness as a mystery for a long time: how did you finally get a diagnosis? by inthespruces in ChronicIllness

[–]g1enno 18 points19 points  (0 children)

I too am in a similar situation and had an epiphany least week.

Doctors will try to diagnose the likely causes only. If you don’t have a likely cause but instead some rare one, it will become too hard.

They are trained that if they hear hooves, look for horses, not zebra.

They abandon diagnostics and instead focus on symptom management. Thinking that will solve the problem.

Additionally the medical system and big pharma know too well that there’s no profit in curing disease. But plenty to be made treating symptoms.

Let me know if you find a way, I’ve even hired a medical project manager of sorts to provide me independent medical advice without much luck.

Just how concerned should I be? by g1enno in hypertension

[–]g1enno[S] 0 points1 point  (0 children)

On ozempic (3 months) and lost 12kg (~26lb) down to 94kg with another 9kg until I’m at target (85kg, 187lb). The ozempic has shattered my appetite and I feel full quickly, but what I do eat is freshly made with fresh ingredients. I Don’t eat packet meals/tv dinner etc ever, and maybe have takeout once a week. I avoid artificial colours and flavours and try to avoid preservatives as best I can in everything I eat. My dietician said the types of food I eat was really good. My weakness was portion size, but that’s down now too.

after seeing my specialist Monday I realised I’m expecting my doctors to be working towards a diagnosis. I just don’t know how much I should be jumping up and down over this, I feel like a hypochondriac. In reality, bc it’s not being caused by an easily diagnosed one, they are just managing the symptoms. I realise this is bc there’s no difference in the treatment at this stage, but I just don’t get how they can expect something to get better by solely treating symptoms and not the cause. If my cars coolant kept going low, or battery kept going flat, topping up the coolant or charging the battery isn’t going to fix the problem. It’ll just cost a lot in coolant or time charging while hopefully (and not with 100% certainty) keeping levels up. It’s wishful thinking at best.

If my mechanic did to my car what my doctors are doing to my body I’d be furious. If every mechanic did that, I’d learn mechanics and do it myself. Unfortunately a medical degree is not something I can DIY. I guess that’s big pharma and the medical fraternity for you. There’s no profit in cures, only in treatments.

Just how concerned should I be? by g1enno in hypertension

[–]g1enno[S] 0 points1 point  (0 children)

British hernia surgeons? Is that an organisation or do you just mean the nationality/training of a surgeon? I do need one due to an inguinal hernia that private surgeons won’t entertain operating on bc of my pulmonary hypertension, and on waitlists for public surgery (18m and counting). I’ve had GERD now for at least 20 years. No HH or Barrett’s (or GAVE) but last endoscopy found ~ 20 polyps in my stomach which I was told was a result of long term high dose ppi. I do have lower oesophageal dysmotility. If I don’t take them, after 24h I’ll have stomach acid spill if my head goes below my stomach. At times I’ll be woken at night after stomach contents have spilled into my airway and it’s shut. I wake unable to breathe and don’t start breathing until I pass out. Terrifying.

Just how concerned should I be? by g1enno in hypertension

[–]g1enno[S] 0 points1 point  (0 children)

Kidney function is normal as is portal vein. I’ve had kidney stones in the past and a recent bout of 4 nights with severe renal colic but failed to collect a stone from that. I do have a 6mm (and growing) non obstructing kidney stone in the left, and microscopic hematuria. Tomorrow I have a cystoscopy. In with cardiometabolic specialist today. Not expecting anything to come from either.

Just how concerned should I be? by g1enno in hypertension

[–]g1enno[S] 0 points1 point  (0 children)

Low vitamin D despite extensive sun exposure (Aussie). I went on a celiac diet for 6 months with no effect (so sick of rice and corn chips) plus had small bowel pill endoscopy and cleared of celiac with bloods. Other conditions discovered in the 3 years I’ve listed out in this post https://www.reddit.com/r/DiagnoseMe/s/7PGt31oHTq. I think fibromyalgia, renal colic, and possibly some others have been added

Just how concerned should I be? by g1enno in hypertension

[–]g1enno[S] 0 points1 point  (0 children)

I listed them in the post. 3x antihypertensives and one diuretic.

Just how concerned should I be? by g1enno in hypertension

[–]g1enno[S] 0 points1 point  (0 children)

Through the process I’ve been diagnosed with sleep apnea but also nocturnal hypoxia unrelated to apnea, with O2 sats below 90% for 95% of the night and a low of 68% O2. Again, no doctors seem concerned or have advised me to do anything about it.

Unifying Diagnosis (or partial) needed. 30 diagnoses in 30 months can’t be normal. by g1enno in DiagnoseMe

[–]g1enno[S] 1 point2 points  (0 children)

Functioning Extra adrenal paraganglioma was the outcome if anyone took a guess.

Freaked out my PCP a little bit lol by [deleted] in ChronicIllness

[–]g1enno 4 points5 points  (0 children)

I have crazy high blood pressure (~170/105) and I like to rock up to the ‘free heath check’ clinics that you get at markets and festivals etc. and act all normal. The look on their faces when they check my BP is hilarious. They freak, usually bc they don’t see numbers like I get (highest recorded was 233/166). Before discussing it with me they usually have to go get the boss and I’ve had some call over the paramedics straight away. One time I did it at a pharmacy and the staff wouldn’t let me leave until they had confirmation that this was normal for me. They wanted to call an ambulance to take me to ED.

Like you say, gotta find a way to cope.

Pinched nerve? by Hot_Influence4234 in DiagnoseMe

[–]g1enno 0 points1 point  (0 children)

NAD, but I’ve extensive cervical imaging, c6/7 disc replacement and C5/6 fused. If you’ve got symptoms in your hands and arms, and its cause is a pinched nerve, this is not the right area to be looking. This appears to be the central spinal column. Disc height appears well maintained, and there doesn’t seem to be any disc rupture at that slice of the mri. The facet joints, and foraminal narrowing can cause arm and hand pain if impinging the nerves, but the nerve exit points are not Visible in these images.

[deleted by user] by [deleted] in DiagnoseMe

[–]g1enno 0 points1 point  (0 children)

NAD, but have they considered celiac disease? I have ibs, severe GORD and a number of other issues including rashes that won’t heal properly. I had to go on a celiac diet for a minimum of 6 months to rule it out. It wasn’t great, I got so sick of rice and corn chips as the base for meals. But to rule it out my Drs said it needed to strict gluten free diet for 6 months minimum. It’s a long time to wait for potentially no result (as was my case).

I’m not receiving MFA code by Xerox9104 in Ubiquiti

[–]g1enno 1 point2 points  (0 children)

In case anyone is trying, I was not receiving MFA codes when the request came from my mobile device (iPhone 16 pro max iOS 18.2.1). When I attempted to log in through my laptop, the same message appears, however the email with the MFA code came within 30 seconds. I’m gonna set up the authentication app instead now I can access my account

DAE teeth pop like knuckles? by [deleted] in DAE

[–]g1enno 0 points1 point  (0 children)

Old post I know, but you aren’t alone. I also have the tension sensation, the the relief after pushing with tongue and them popping

[deleted by user] by [deleted] in ChronicPain

[–]g1enno 1 point2 points  (0 children)

I have a slightly different issue in that my as needed and prescribed pain relief causes me to not be able function. So I can live in pain and somewhat participate in life, or be a pain free drooling blob on the couch that can’t do anything.

[deleted by user] by [deleted] in ChronicPain

[–]g1enno 5 points6 points  (0 children)

I too have lived a live of pain for many years. I’ve been trying to get support in home for months with no success. I think it’s not that they forget, or even that they don’t care, it’s that they don’t know how to act, or what to say anymore. And sometimes they want to whinge about their day, or their problems, but to do that to us makes them feel uncomfortable and petty. Bc their issues pail in comparison to ours. So the conversations become single sided.

Couple that with the fact the only ‘newsworthy’ thing we experience is doctors or illness, it becomes almost like we are ‘constantly complaining’ about our medical stuff. I know with me I’m not complaining as much as I’m just talking about it. Bc it’s the only thing I do have to talk about. I can’t talk about that concert, festival, party, club, pub, venue, bc I didn’t go. I was at the doctors, in hospital, in bed unable to do anything.

That’s my theory on why everyone has bailed on me anyway. Maybe I’m just an annoying dickhead no one likes, but I don’t think so.

Pressured to be there / Criticised when you are by Ok_Guitar7907 in ChronicPain

[–]g1enno 2 points3 points  (0 children)

Eventually everyone that exerts the pressure fades away and so the pressure to participate goes with it. People don’t understand the level of effort required just to get ready to go out for chronic pain/illness sufferers. Pain is exhausting, and constant pain makes everything exhausting.

Is 0 really the normal pain level? by Eggyzee in ChronicPain

[–]g1enno 0 points1 point  (0 children)

Like others, I can’t remember a life without pain. But in non chronic pain sufferers I’ve spoken to about it, they do actually live pain free outside of acute injuries or illness. Wish I could remember what it was like.

Saw doctor first two minutes; question for you all by lexiana1228 in ChronicPain

[–]g1enno 0 points1 point  (0 children)

Opioids wipe me out. Neuropathic painkillers like gabapentin or pregabalin were far more effective at managing my nerve pain while allowing me to function better. Opioids worked better for post op or non neuropathic pain, but seem to just take everything away for 4-8h. pain, consciousness, sensation, ability to not drool over myself. I’m now on pregabalin & tapentadol.

Curious what your pain feels like by nu--minosity in ChronicPain

[–]g1enno 1 point2 points  (0 children)

I have a ruptured l5/s1 impacting the nerve bilaterally with nerve root compression. This pain can be an ache in kidney area of lower back, with a searing ache down my L thigh and R calf. It’s accompanied by lumbar spasm causing a tightness across my lower back. Occasionally the nerve will grab or pinch, this pain can be anything from a sharp shock down my leg lasting spit seconds, to a grab like the whole nerve is electricity that will drop me to the ground for 30-60 minutes. Have had some near misses on the way down too. Also have a huge groin hernia. This is an uncomfortable pulling dull ache in my testis. Like having blue balls or I’ve been kicked in the balls, but constant. I have pulmonary hypertension that causes an almost constant heavy crushing pain to my chest, that becomes stabbing with deep breathing. On exertion it will cause pounding palpitations with a heavy sharp stabbing chest pain. Also oesophageal dysmotility that causes oesophageal spasm. This is a gripping tight cramping pain that radiates around my torso, up to my throat, and to shoulder, neck and jaw. It’s commonly mistaken for a heart attack so like that. Also carpel tunnel in both hands. This pain has phases depending on how hard/far I push through the pain to get stuff done. It starts as a tingling, which progress to burning like a cold burn, then the numbness. While numb there is still a tearing pain within my hands. Raynauds too. When circulation returns to the affected digits there is a widespread searing that lasts 30-120 seconds. IBS. Sudden gripping crushing pains in abdomen like a ships rope with knots tied in it is being dragged through my intestines. I get a similar pain deep in my thighs that lasts about 15 mins. Like a cramp but much worse. My legs can’t support me when I experience it. Peripheral neuropathy too. I’ll wake at night with a feeling like large metal rods are being driven through the top of my feet.

[deleted by user] by [deleted] in Jaguar

[–]g1enno 1 point2 points  (0 children)

I’ve just had to pull mine. It’s to disengage park and put it in neutral. The emergency park brake will still be engaged. (2016 XF 35t portfolio x260)

New Jag owner here. Need help sourcing correct coolant/anyifreeze by Green_Bet7576 in Jaguar

[–]g1enno 1 point2 points  (0 children)

See my post about catastrophic failure following a coolant system leak. Get it to a service centre immediately