Double Whammy, when physical pain is stronger than social pain

[ForestGumpett]

It seems like there is quite a few younger folks here so not sure if I’ll get any help with this or not.

I was put on disability in 2015, too young to be in that much pain but life doesn’t give us choices many times. It’s a genetic condition that I was fortunate enough that it didn’t really impact my life until in my 50’s. When it hit it hit hard and took most things I had left to enjoy away, mostly being physical and outside.

Anyone fighting with physical pain and it making it even more difficult to have relationships? I suck at conversations, I am misread and do the same to others - this whole Aspie thing is new to me too. Everything makes sense now, but now I’m pissed as heck at all the adults that let me down in my life.

Reckon I’m just ranting, but thanks for listening.

 

[Thinx]

Sorry you are up against this. I have a relative who is in a similar position, it's hard. Although they don't seem to want to relate to others much, but they really miss going for walks.

How do you mean about adults that let you down? I'm similar age to you, and high functioning autism wasn't something that got diagnosed back in the 60s or 70s much, when I grew up. But Ive done plenty of therapy about disappointment with parents, not about that so much as their unavailability due to being busy, absent or arguing between themselves.

 

[ZebraAutismo]

Physical pain definitely makes me less tolerable and less able it be social. Honestly though a lot of people of scared of me before they even know me. Is it the wheelchair, the drunk stagger or do I give of autism vibes?

 

[ForestGumpett]

Physical pain definitely makes me less tolerable and less able it be social. Honestly though a lot of people of scared of me before they even know me. Is it the wheelchair, the drunk stagger or do I give of autism vibes?

I’m also a “Zebra”, was dx at Baylor genetics few years back so yeah you def get the pain! I’m not in a chair so folks expect me to be fine because I look fine unless you can see through to the wince of pain in my eyes. My husband knows it, but others think I’m just being rude needing to sit or just catch my breath. It takes a few hours and drugs to get out the door, and finding meds I’m not allergic too is almost impossible. The RA doc bout killed me with that serotonin mess, thinks it’s for pain??? Morons! blood doc said they poisoned me with it not to take it ever so I don’t.

Now I’m wondering if there are many other Zebra Aspies?

 

[Misery]

Oh yes, I'm very familiar with pain. Very... very familiar. Even right now I am currently wearing an arm brace (the sort that is like a band of fabric, I guess is how I could describe it) and took yet more freaking Advil earlier. Ugh.

In my case, it's a chronic thing. I'm nowhere near old enough for this nonsense, but it doesnt matter, it's there anyway, of course. It actually started quite awhile ago... I'd say probably like 2008? Hard to be sure. I graduated in 2000, so... yeah, not that old. The first time it hit me, it hit HARD. Very, very sudden. I ended up on the floor for probably about a good 20 minutes. Sciatica nerve or whatever it is had flared for the first time and I found myself mostly unable to walk for awhile. It sure wouldnt be the last time. This major flare-up can also occur in my neck. Either is very painful and can make doing much of anything very hard. The only thing that REALLY helps is physical therapy (and of course, if you've ever done PT, you know it can sometimes hurt worse than the problem, heh).

Also other similar issues. In 2010, my arm flared up for the first time, triggered by mouse use. That was bad and that did NOT fade. I actually ended up rigging a game controller to control the mouse, as I just couldnt keep up the arm/wrist movements to fully use one. This lasted for probably about 2 years. Again, therapy is what did the trick. Constantly thankful for my excellent therapist who has helped me to somewhat get this nonsense under control... I dont have flareups nearly as often and know how to avoid/prevent it. Well, my arm can flare up often enough but it typically lasts for like a day instead of 2 bloody years. I also got a vertical mouse instead of a traditional mouse, that makes a huge difference.

Overall, I have a tendency towards nerve & tendon pain. It's nothing that's genuinely dangerous or damaging... it just hurts like heck when it acts up, and sometimes "normal" pain meds (like Advil or Tylenol) simply arent strong enough to have any effect on it. I ended up with prescriptions for cyclobenzaprine and Tramadol. It didnt take long for me to learn just how strong those are. According to the docs, the "max dose" I could take (for when it was extra bad) was 2 of each at once. Yeah... I only did that like one time. That stuff could knock out an elephant. Literally almost fell asleep standing up, which is... not a very pleasant experience. Particularly when you're in a bathroom. I tell ya, I didnt do THAT again. But still, I'm glad those meds are there for when I need them. Thanks to therapy, I havent had to take the Tramadol (which is the strongest one) in quite a long while.

But still, it gets in the way, simply by the POSSIBILITY of it being there. Some things, I simply cant/wont do, because I recognize the chance of said thing causing a flareup. For instance when I was in school, I was taking golfing lessons and such. No way I could swing those clubs now. Well, I mean, I COULD, but it'd likely be a fantastically awful idea. And again, I'm not old enough for this idiocy, so that's extra frustrating.


So yeah, that's my Bloody Stupid Pain Journey. I can certainly sympathize with anyone going through anything of that nature. It sucks. A lot.

 

[Tom]

I've been dealing with chronic pain since an injury in 2005. I just happened to shift to my standing station with the computer as sitting had again become too uncomfortable, when I read your post. I have to do that a few times a day. I can be very hard at times, as pain kind of induces it's own psychology. But along the way I figured out that fighting to stay positive with your loved ones is as important as fighting the pain. I am lucky to have a great spouse and family and 4 wonderful little Chihuahuas who help keep me sane with their endless antics. I guess it's making the most of things as they are, whatever they are. I'll include I had to fight off (well really it was the marvelous medical establishment and new treatments that did most the fighting) leukemia twice. Three years in remission and still going. I don't do big things anymore but the little things can be just as rewarding.

P.S. What is a Zebra Aspie?

 

[Aspychata]

For some reason, l deal with constant physical pain that seems to present in certain places. It's hard. l am now doing a lot less. Kinda feel upset yet l can totally do nothing. So l push people away and try to handle it myself now anyway l can. I have decided to try to stay home more. Thanks for posting this. We need to talk about this in a safe place.

 

[ForestGumpett]

@Tom ; I assumed when she said “Zebra” she was referring to Ehlers-Danlos Syndrome, the Zebra is used as their mascot so to speak because so many doctors misdiagnose those that have it. It’s said to be rare but I do not think so personally. Some with it do not live until their 20’s and then some live a long time but you more less fall apart. Kinda like dry-rotting?! I have type 3, called hypermobility Ehlers. The gene with me called the FLNA was off, this also causes seizures and learning problems, not sure if it has anything to do with the Aspergers or not?

My heart valves are floppy, as is my gut which makes eating sometimes a literal pain. The genetics physicians at Baylor said many that are told they have fibromyalgia really have Ehlers but the doctors are not educated regarding Ehlers-Danlos and this is why so many are being treated with the incorrect meds and made worse.
Sorry for the long answer, I do tend to get too wordy.

The 4 dogs you have sound fun, I bet nobody could sneak up on your home! My grandma had a Chihuahua live until 18 yo.
Also, congrats on the years of remission, will pray for you that it stays that way

 

[ForestGumpett]

@Misery ; wow you have a lot to address there! Sorry your going through all that, and yes you are mighty young for all that. I have a great niece playing golf, it’s such a nice game so hope it turns around for you.

Google Ehlers-Danlos, who knows - when you mentioned tendons that is one of the first places it gets but so does RA and a lot of other illnesses that young people can get. Ehlers is now getting dx in young people but folks like my age got missed or they called it something else. Not sure where you are but the UK seems to have the best info, doctors there don’t seem to be so hard on pushing the pharmaceuticals as they are here in the states.

 

[Bolletje]

Now I’m wondering if there are many other Zebra Aspies?

They occur together often enough it might as well be declared a common comorbidity.

I strongly suspect I have hypermobility type EDS as well, but the rheumatologist I visited last year for my chronic pain didn’t want to hear about it and told me it’s probably just fibromyalgia and I should lose weight.

I hate how the pain is sometimes so unpredictable. Some days I go to bed feeling fine and wake up in so much pain. It severely impacts my mood on bad days. I try not to let it, but sometimes the pain wins. I was let go from my last job because I took too many sick days and they couldn’t rely on me. I understand from an employer’s perspective, but it’s not as if I was taking sick days to go shopping. In my current job I’m worried to call in sick for this reason, but at the same time my job is so busy at the moment it is causing me a lot of pain in my upper body. It’s a mess, is what it is.

Anyway, I know another Aspie with hypermobility type EDS. She used to be active on these forums but no longer is. I’m sure you can find some more topics on EDS on autism here if you use the search function.

 

[ForestGumpett]

@Bolletje ; this is my hand, one of many ways it can be bent. Doesn’t hurt at all, I’m 60 so it’s not like I’m young and bendy, just old and dry rotted lol. I can stand and touch my hands backwards behind my legs without bending my knees. It’s all fun and games until your doctor comes around and realizes your joints, veins, tendons, and eyesight (friggin everything) is touched by this and bends like that too. It all has to do with collagen, it’s a defect in the collagen to put it simple.

If you find out you have it then there are things you can do to help, it will not go away but I’d say that naps are my biggest sword in this fight for energy. The pain, if you have it them PM me we’ll talk! I’d imagine that CFS/ME are in this ball park too - it was on one of my RA’s dx once. She never did get it right but tried, it was a doctor from Lithuania here in the states that gave me a proper dx.

 

[Bolletje]

View attachment 67343 @Bolletje ; this is my hand, one of many ways it can be bent. Doesn’t hurt at all, I’m 60 so it’s not like I’m young and bendy, just old and dry rotted lol. I can stand and touch my hands backwards behind my legs without bending my knees. It’s all fun and games until your doctor comes around and realizes your joints, veins, tendons, and eyesight (friggin everything) is touched by this and bends like that too. It all has to do with collagen, it’s a defect in the collagen to put it simple.

If you find out you have it then there are things you can do to help, it will not go away but I’d say that naps are my biggest sword in this fight for energy. The pain, if you have it them PM me we’ll talk! I’d imagine that CFS/ME are in this ball park too - it was on one of my RA’s dx once. She never did get it right but tried, it was a doctor from Lithuania here in the states that gave me a proper dx.

Thanks for the response. I’m unlikely to get a diagnosis, it’s hard to get a referral for a second opinion around here. But I’m a medical doctor, I feel relatively confident in my own assessment. My hyperlaxity isn’t as pronounced as yours though.

For me it mostly comes down to pacing myself, watching my spoons and moving very deliberately, because a wrong move inadvertently leads to a sprain. My favorite thing is waking up with a sprained wrist or elbow because I overextended it in my sleep. I’ve discussed orthotics with my physical therapist, but he’s advised against it. Eh. I don’t know anymore.

 

[ForestGumpett]

Thanks for the response. I’m unlikely to get a diagnosis, it’s hard to get a referral for a second opinion around here. But I’m a medical doctor, I feel relatively confident in my own assessment. My hyperlaxity isn’t as pronounced as yours though.

For me it mostly comes down to pacing myself, watching my spoons and moving very deliberately, because a wrong move inadvertently leads to a sprain. My favorite thing is waking up with a sprained wrist or elbow because I overextended it in my sleep. I’ve discussed orthotics with my physical therapist, but he’s advised against it. Eh. I don’t know anymore.

Unless your a kid, I don’t know what good it would do if you already know what to do and it appears you do. The dysautonomia and GI have been the most difficult to deal with, learning to eat different worked as in mostly juicing due to lack of gut mobility (will put a plug in for Gerson Therapy lifestyle eating) however the temperature changing CNS thing is the worse part I believe. Not POTs, but I do hit the ground when heated. The kitchen and dryer are like krypton to me I drop to the floor like a wet dish rag.

This is funny, I had a doctor look me in the eyes and tell me: You can’t have Ehlers, only children get Ehlers-Danlos. I did have to tell this woman that yes...at one time I was a child. Wow, unbelievable.

 

[SusanLR]

Rest/naps are the only thing that helps my pain.
Fibromyalgia, spinal stenosis and disc bulges, plus a knee that is so crooked it causes a limp
and needs replacement.
Hot packs help the muscle pains. IBS goes with it all.

Any surgery has been put on hold now until the docs find out what's starting to go wrong with my
heart. Maybe a stent, maybe a valve leakage problem.
Have to get cardiac cath Wednesday.
Really fearful on that one.

 

[ForestGumpett]

Rest/naps are the only thing that helps my pain.
Fibromyalgia, spinal stenosis and disc bulges, plus a knee that is so crooked it causes a limp
and needs replacement.
Hot packs help the muscle pains. IBS goes with it all.

Any surgery has been put on hold now until the docs find out what's starting to go wrong with my
heart. Maybe a stent, maybe a valve leakage problem.
Have to get cardiac cath Wednesday.
Really fearful on that one.

Regarding hot packs, have you tried the one’s with Cherry Pits? Out of all of them it seems that the cherry pit made bags will retain heat for a very long time. I can take them to bed to put on my hip and will wake hours later and they are still warm!!! I had not heard of them until about a year ago, cherry trees didn’t grow in the part of the world I grew up in due to the hot weather. I get them on ebay, would recommend getting them at least 16+” long.

Have you googled Ehlers-Danlos? Just a thought, from what you have said so far you could check the boxes for Ehlers. IBS, valve leaking, spinal stenosis.

Teeth, going to the dentist is horrible if your dentist doesn’t realize you have Ehlers if you have it. Why? Because it will take at least 2+ shots to numb because of the collagen made poorly, the dentist will have to fill my mouth full of shots for the liquid anesthesia to stay long enough for the dentist to do the work. Dental stories, another give away that it could be Ehlers.

 

[Major Tom]

I've been dealing with chronic pain all my life, since I was 12 my back officially went out for the first time. It sucks especially at first, but eventually you do get used to it. It can lead to depression and all sorts of other nasties, so my sympathy goes out to you. The real pain is when people don't believe you are actually in pain and refuse to help, especially those in the medical industry. It led me to moving to a different country where I can actually get healthcare that is decent and not just shoveling steroids and opiates down my throat.

 

[Bolletje]

Unless your a kid, I don’t know what good it would do if you already know what to do and it appears you do.

Yeah, that's why I'm not pursuing diagnosis at the moment.

The dysautonomia and GI have been the most difficult to deal with, learning to eat different worked as in mostly juicing due to lack of gut mobility (will put a plug in for Gerson Therapy lifestyle eating) however the temperature changing CNS thing is the worse part I believe. Not POTs, but I do hit the ground when heated. The kitchen and dryer are like krypton to me I drop to the floor like a wet dish rag.

Sounds all too familiar. I had auto-immune pancreatitis as a kid and ever since I've been dealing with serious IBS. Lack of motility is not an issue for me, it's overactivity in my case. It's bad enough that sometimes, a few bites into dinner, I have to make a run for the bathroom. I have identified a lot of trigger foods, but sometimes my gut will just act up even when I avoid all triggers.

My biggest problem with heat is that it can trigger my MACS, which means I'll break out in hives and get shortness of breath. The combination of moisture and heat is the biggest culprit, so showers can be problematic.

 

[ForestGumpett]

@Bolletje ; I’m not sure what MACS is? Heat temps are such a problem we are moving to a cooler climate area this year.

Doctors are a problem, when I have these “spells” they last about 2-3 minutes and I cannot talk, walk or even sit up. This has happened in their office, from a GP to a heart doctor and I get the same reaction, nothing?!!! They look at me, observe then say nothing. They do not know what to do it seems, or what is going on. They look to me for answers. :-(

 

[tree]

I don't know either.

Is it this?

• MAC infection is a serious condition that can cause damage to the lungs.
• MAC infection is not contagious.
• Common signs and symptoms of MAC lung disease include fatigue, chronic cough, shortness of breath, night sweats, coughing up blood and weight loss. Symptoms may persist or worsen despite being treated for another lung condition.

MAC Lung Disease

 

[ZebraAutismo]

I’m also a “Zebra”, was dx at Baylor genetics few years back so yeah you def get the pain! I’m not in a chair so folks expect me to be fine because I look fine unless you can see through to the wince of pain in my eyes. My husband knows it, but others think I’m just being rude needing to sit or just catch my breath. It takes a few hours and drugs to get out the door, and finding meds I’m not allergic too is almost impossible. The RA doc bout killed me with that serotonin mess, thinks it’s for pain??? Morons! blood doc said they poisoned me with it not to take it ever so I don’t.

Now I’m wondering if there are many other Zebra Aspies?

Actually using the chair is a relatively new thing for me. It’s something I avoided for too long. Although now when I walk people are unkind and call me a fake. People can be awful.Due to stomach issues most pain meds are out for me so I get very little relief.