Happy Halloween!

Just wanted to wish everyone a Happy Halloween tomorrow! 🎃👻🤡🤠 Yesterday I must have gotten out of bed wrong, which is funny because I’ve done it approximately a million times before, especially this past four years. Anyhoo, my back is out and the pain is excruciating, which is something for me as a chronic pain warrior. So it’s back to being flat on my back. For Halloween I should dress up as a sheet. 😉

A few more watercolors from this last week as I follow along with World Watercolor Group on Instagram. Wishing everyone a safe, but incredibly fun, Halloween! Oh and if anyone has any back pain advice I’m all ears. My back’s only gone out once ever about five years ago and I just rested it away, which I’m sure will be the answer this time too. As I told my son, the silver lining is I didn’t have to call in sick or feel guilty for taking time off work…so there’s that.

 

22 thoughts on “Happy Halloween!

  1. Hmmm… heating pads. Ones shaped like a mat to lie on. And, a pregnancy u pillow to sort of be sideways with less pressure on your back. These are things I learned from an EDS life hacks tricks Facebook group group once I learned my “subluxing something back there while I sleep” thing is common in EDS. Also…you’re being tested for POTS and have lifelong back problems? Were you ever bendy enough to have EDS? I have read up to a quarter of Fibro/CFS dual diagnosis patients might have qualified as EDS/POTS patients if Beighton tested early enough in life they could still do the party tricks. After 50, though, you can pretty much only back diagnose on patient history. The bendiness goes away eventually- the pain doesn’t:-(

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    1. Thank you for the ideas! I’ve been icing and that seems to help a little. I’ll pull out the heating pad too. And yes very flexible always, doctors said I was double jointed, although it’s tapered as I’ve gotten older. This pain is a bear and I’m not one to complain about pain much. I’ll have to read up on EDS again. I’ve suspected my son, who has back problems, as well as random joints popping out, has it. Hoping all is right as can be in your little corner of the world.🌻

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      1. The “random joints popping out” is usually a pretty good sign – the main one in fact – of EDS 😉 And, it’s autosomal dominant, so if he has it, it usually comes from just from one parent. My brother was dislocating something every other month growing up, but I was so cautious I got to my thirties before it got bad enough I started fully dislocating instead of just subluxing. I watched him dislocate things, and the pain that caused, and never tried the things he did for fear of the same outcomes. It resulted in me knowing I was naturally flexible from yoga, but genuinely not realizing I was “freaky, legs behind head” flexible until the EDS diagnosis process. If my brother wasn’t worse as a kid, I might never have connected my lifelong back pain, random rolled ankles and inability to hold a pencil for long without pain to EDS. I was just like you – flexible and called double jointed (usually in an insulting way by some coach or instrument teacher who pointed to it negatively as the reason I couldn’t do something right because of my ankles giving out or my finger joints popping holding a bow). It’s honestly not *that* different in pain management from fibro, to the point where my own doctors have recommended looking at fibro tips to manage my own pain. But, the heavy use of braces and specialized PT is something you see in EDS but not fibro because of what is *causing* the pain fundamentally. And, they’ve honestly been more helpful than pain meds a lot of the time for me, even in flares. I’m pro meds in general, but another sad fact of EDS is it often comes along with a genetic resistance to pain meds such that local anesthetics or topical pain meds don’t do much, and we need higher doses of even opioids to feel much. I’ve known that about myself since I was given straight morphine for post-surgery pain and – despite all the scary warnings about possible addictions and not driving because it’ll knock you out – genuinely couldn’t figure put what the fuss was about. It didn’t do much for my pain. Now, knowing what dose I’d probably need to get relief, I’m scared to ask. EDS patients get labeled drug seekers all the time for that genetic resistance, and I already have to deal with the state system about taking ADHD stimulants. So, I’m *all about* the braces and PT for pain relief. They do help.

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      2. Thank you for sharing this information with me. I’m sorry you and your brother have had to travel on this journey of frustration and misunderstanding. It really does shape who we become as adults and I wish people stopped to think about that before saying ridiculous things. My son has that tolerance too, so much so that he doesn’t even take Tylenol because he says it “doesn’t do anything”. I was on a morphine drip one time for a kidney infection and still in pain. I’ll have to investigate for both of us further. Which specialist looks into this diagnoses? Is it genetic testing?

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      3. Usually you can start with a rheumatologist who can at least give a preliminary diagnosis of joint hypermobility syndrome, then eventually get a genetics referral. But, if you have the hypermobile type, a lot times the geneticist won’t even make you pay for full testing after exam, as the test is expensive and less needed if you aren’t like to be the vascular subtype. But, once you have at least a hypermobility spectrum diagnosis of some type, you can start billing for PT and things. You may not care about the genetic minutia. I just had to care because of my brother’s 9th Circle of Hell doctors not being willing to diagnose without incontrovertible proof I had it as a first degree relative. The arseholes there will manage to even dismiss dislocations and seizures as “psychiatric behaviors” if the patient can’t talk.:-( So, I did the whole rigmarole.

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      4. Well now my curiosity is peaked and I have raw dna for both of us so I might see what I can find. Geez you’ve really been through the ringer but you keep rising up. I hope you know how admirable that is. Your brother is a lucky guy to have you in his corner. I’ll bring it up to my Rhuem. Last time I did PT/once every two weeks…it was too much and my labs started to get messy but it’d be nice to have some answers. And yes good to have fever reducers on hand! Thank you again for sharing!!🌻

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      5. Braces also help, even if PT is too much. I have so much less hand/wrist pain after typing (which is pretty important for a data analyst) now that I own ring splints, and I have braces to wear at night on the joints most likely to get hurt. I try to avoid wearing during the day, since it can make your joints even more “lazy” and try to work hard in PT. But, at night they have seriously reduced random injuries from thrashing in my sleep. I haven’t experimented with a soft cervical collar yet, but I have an open referral to orthotics to get one for the neck/back pain for night use if ever needed. My PT recommended not pursuing until we do specialized neck PT (my neck is too weak to literally hold up my head, so apparently my back muscles have been taking the strain and that is contributing a lot to my back pain already). But, a few other EDS bloggers recommend them highly for those who hurt their neck/back, especially at night.

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      6. Interesting. I have had intense, unexplained, neck pain for over a decade. I’d read that’s common with FM. There’s got to be a commonality amongst these illnesses. I’m glad you’ve found ways to help your pain where you can. It makes all the difference to at least be able to take the edge off without side effects.

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      7. And, yeah, I never kept any OTC pain meds in the house until I moved in with my Partner. What would be the point, as your son says? :-p (My Partner did later convince me that I should at least take his if I have a high fever, so I guess there’s that.

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  2. I’m a little late with this, but Happy Halloween!
    Such sweet paintings as always.The Charlotte’s Web inspired one is so cute =]
    I’m sorry about your back, sounds very painful! I hope you can rest up and that it eases off soon…xx

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