sue1234 Posted July 18, 2014 Report Share Posted July 18, 2014 I was just wondering if anyone else had this? I do not have EDS, so it is not any type of hereditary joint laxity issue. I'm not saying I couldn't have acquired some laxity related somehow to POTS!? I find in the last 2 years I've been able to build up my standing time from about 10 minutes 8 years ago to about 2 hours now. That 2 hours is NOT standing still at all, but like moving around in the kitchen constantly while cooking. I might be up for 20 minutes, then feel I should sit for 10 minutes. Then, back up for 15 minutes and down for 5. And so on.I've been building this for the last 2 years. For the whole first year, I told myself that after 6 years of mostly sitting, I had to slowly build up muscle strength. Well, I'm sure I have built some leg and core strength to go ahead and be upright for those 2 hours. BUT, what stops my upright time is "girdle" pain. By the end of my time limit, my hip bones hurt, my very lower back hurts, and everywhere in between those. I don't know why, and that is bothering me. I was told I could use hip replacements, but that doesn't explain the pain around the whole girdle/upper thigh area, so not sure why I hurt so much. My upper back doesn't bother me an ounce from standing and bending to cut/cook, so I don't think it is just unused muscles. Sorry for the rambling...it is hard to explain it all. Anyone else have a clue why I have issues standing? I just want to mention that before POTS, I had zero pain standing all day. The first 6 years of POTS I had zero pain with my limited standing. Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 18, 2014 Report Share Posted July 18, 2014 I have lower back and pelvic girdle pain from a bulging disc in my lumbar area that sometimes contacts my sciatic nerve. I isn't shooting pain (anymore, it was originally), it's more annoying, sore, fatigued pain. Now of course I do have EDS so that doesn't help as it also contributes to pain in the are with subluxations that keep inflammation in the area. Quote Link to comment Share on other sites More sharing options...
Chaos Posted July 19, 2014 Report Share Posted July 19, 2014 Your hips might be referring pain into the areas you are describing. Given the amount of arthritis you described in your other post about your hips, that might be the source of some of your pain. Or, it may be that you are having to change your posture or your patterns of movement due to the hip arthritis and that is causing muscle and fascia pain due to these new and abnormal patterns you are developing, most likely unconsciously. Just a couple of thoughts as to what might be contributing to the pain after you're up for a period of time. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 19, 2014 Author Report Share Posted July 19, 2014 Thanks Katy and Chaos. I have had reports in the past on some lumbar degeneration on CT scans and/or x-rays, but I never had any issues so I never pursued asking about it. And, I am not familiar with how arthritis works. I am only familiar with when older people say they wake up with pain and have to use their hands a while for it to feel better. So, I was assuming I would have pain most of the day, but like I said I am not familiar with this.I think it is time to see a neurologist to check on the lumbar stuff. If they don't see anything that might be causing it, then I guess I can chalk it up to the arthritic hips. In that case, I can still have my replacements, which I don't want to have if I can skip it!! Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 19, 2014 Report Share Posted July 19, 2014 It's also not an easy place to keep strong. As a horseback rider, that area was very strong but it has amazed me how quickly it has weakened since I had to stop riding. And we are working on strengthening it as part of my PT for core strengthening but it is slow going and aggravating to the pain that's already there. A bit of a vicious circle really. I can't remember. ...are you taking a joint supplement? If so, does it include hylaronic (sp?) acid which is a more bioavailable form of glucosamine? Good joint supps these days have glucosamine, chondroitin, MSM, and hylaronic acid. Quote Link to comment Share on other sites More sharing options...
Chaos Posted July 19, 2014 Report Share Posted July 19, 2014 If you have degeneration in the lumbar spine, that may be part of the problem as well. I have severe degenerative disc disease at a couple levels in my lumbar spine from a spondylolisthesis and I know I have pretty severe pain after trying to stand for awhile, especially on a hard kitchen floor. As Katy said, core stabilization helps. When I was still able to teach yoga, even with the degenerative disc disease, my back and neck felt so good I forgot I even had a history of back problems. Since I developed POTS etc and have such severe PEM with any exercise I try to do it's a vicious cycle of trying to keep my core strong without flaring everything else up so badly I end up stuck in bed. Quote Link to comment Share on other sites More sharing options...
Science girl Posted December 2, 2015 Report Share Posted December 2, 2015 Sue did you ever work this out?As I became more mobile I had similar issues. It turned out I had osteomalacia due to really low vit d. Happy to say I have much less problems after taking vit d. It took a while to build up bone strength again but i got there. Not sure if it was being bedridden and not getting enough sun causing the low vit d or it could be mast cell activation as mast cells deplete vit d. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted December 3, 2015 Author Report Share Posted December 3, 2015 Science Girl, I still have that problem after around that 2-hour stand up time. Since that post, I have continued to build my vitamin D up into the normal range, but I seem to still have the pain. Maybe I still need to get it up higher.I'm glad your pain went away! Quote Link to comment Share on other sites More sharing options...
Science girl Posted December 4, 2015 Report Share Posted December 4, 2015 I still have pain when walking but then my POTS sets in anyway and i need to rest. But it's better than a few years ago.Do you think it's bone pain? Or could it be fluid or pooled blood? I get pain in my pelvis and stomach if I wear knee high pressure stockings. I think it is that blood pools higher up. If it hasn't got enough space fluid would leak into this space creating swelling. Just a thought Quote Link to comment Share on other sites More sharing options...
Science girl Posted December 4, 2015 Report Share Posted December 4, 2015 Oh I also take antiinflammatories daily Quote Link to comment Share on other sites More sharing options...
sue1234 Posted December 4, 2015 Author Report Share Posted December 4, 2015 I have NO idea if it is bone pain or pooling causing the issues. I cannot wear high compression, as it makes my chest feel "full". I tried just putting the compression stockings on my feet the other day, and that worked for a few hours until the compression hurt my feet and had to remove them. Quote Link to comment Share on other sites More sharing options...
Science girl Posted December 4, 2015 Report Share Posted December 4, 2015 Sorry I can't be more helpful! I hope you find some answers and some relief. Keep looking and experimenting and stay strong! Quote Link to comment Share on other sites More sharing options...
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