sweet2ndchance Posted July 19, 2022 Share Posted July 19, 2022 I'm not usually one to complain but I'm have a rough go of it lately and I'm wondering what I should talk to the dr about. Background: I have Ehlers-Danlos Hypermobility, formally diagnosed, and severe scoliosis untreated, measuring 55 degrees over 45 degrees last time it was measured a couple of years ago. MRI a few years ago showed bone spurs forming at the base of my spine. (I'm 43 if that matters) Since early June of this year I've been getting episodes of debilitating back pain. With having had scoliosis since I was a child, I've always had a moderate amount of back pain but this back pain is new. It is sharp, radiating pain from the base of my spine, through my right hip and sometimes down into the top of my right thigh. Most of the pain is in my back and hip most of the time though. Stretching, moving, massaging, heat nor cold do anything to relieve the pain. We have some 5% lidocaine patches that dull some of the pain in my back but does nothing for the deeper pain in my hip. Even with the patch, there is still aching pain in my lower back and sharp pain in my hip. It hurts to stand up, it hurts to sit down, trying to lift my right foot to put clothes or shoes on exacerbates the pain in my back to the point that I collapse or almost collapse from the pain. Laying down usually makes the pain subside but as soon as I try to sit up again, it is back with a vengeance. These episodes last anywhere from 3 - 4 days to a week or more with about a week or so in between episodes. I already take the max dose of meloxicam for arthritis pain daily. It helps tremendously for general joint pain with EDS but does nothing at all for this new back pain. I don't really want to go the narcotics route. I know from past experience that it will take the pain away but I also have a very low tolerance and they will knock me out. Sleeping the day away pain free isn't helpful lol. I want to be able to work on things at the computer again. I want to be able to stand for at least 15 minutes again (that's as long as I've been able to stay standing comfortably for a few years now but this new back pain, I can't even stand for 5 minutes). Most things I can find on back pain suggest all the things I've already tried or narcotics. There have got to be other options, right? Could this be worth seeing a pain specialist? Dh used to see one before he got his brain shunt and we really like him (he will flat out tell you up front when you first meet him that he does not prescribe narcotics to anyone) but I don't know if that's even appropriate to ask for a referral to him in my case. WWYD? Quote Link to comment Share on other sites More sharing options...
Starr Posted July 19, 2022 Share Posted July 19, 2022 What do the doctors, surgeons, and PT say are your options? 3 Quote Link to comment Share on other sites More sharing options...
sweet2ndchance Posted July 19, 2022 Author Share Posted July 19, 2022 Just now, Starr said: What do the doctors, surgeons, and PT say are your options? I'm too old for scoliosis surgery. Physical therapy has never been brought up as an option. Last doctor's appointment I had with my gp she was more concerned with my worsening depression and anxiety than the back pain that I brought up which in her defense, my mental health has historically been a much bigger concern than my physical health most of the time. I do have another appointment with her soon so I want to have some ideas to discuss with her since this back pain is still a problem. Quote Link to comment Share on other sites More sharing options...
footballmom Posted July 19, 2022 Share Posted July 19, 2022 When is the last time you had an X-ray or MRI? DH recently “tweaked” his back, it took him months to become more “normal”, and finally saw the back doctor - he had a herniated disk and ended up with surgery. His symptoms sound very similar to yours. The MRI is what showed the herniation 1 Quote Link to comment Share on other sites More sharing options...
kristin0713 Posted July 19, 2022 Share Posted July 19, 2022 I’m not sure what stretches you’ve tried,but the McKenzie Method worked wonders for me. You can also buy the book on Amazon. Maybe there are YouTube videos as well. I’m sorry, I understand. Back pain is horrible, really debilitating, and messes with you mentally as well. 2 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted July 19, 2022 Share Posted July 19, 2022 I would think I would want to see a spine specialist re: bone spurs and pain management. 8 Quote Link to comment Share on other sites More sharing options...
Starr Posted July 19, 2022 Share Posted July 19, 2022 I have a friend who had very serious back surgery for a large curvature in her 40s. I would be seeing the top surgeons before I gave up. It was months of healing but her life is hers again now that it's done. Your mental health may also be related to living with pain. I'm so sorry that you are miserable. 4 1 Quote Link to comment Share on other sites More sharing options...
sweet2ndchance Posted July 19, 2022 Author Share Posted July 19, 2022 4 minutes ago, footballmom said: When is the last time you had an X-ray or MRI? DH recently “tweaked” his back, it took him months to become more “normal”, and finally saw the back doctor - he had a herniated disk and ended up with surgery. His symptoms sound very similar to yours. The MRI is what showed the herniation I can't remember exactly when the last x-ray and MRI was but it was since the start of covid, so maybe late 2020, early 2021? 4 minutes ago, kristin0713 said: I’m not sure what stretches you’ve tried,but the McKenzie Method worked wonders for me. You can also buy the book on Amazon. Maybe there are YouTube videos as well. I’m sorry, I understand. Back pain is horrible, really debilitating, and messes with you mentally as well. I have never heard of that but I do have a pillow type thing in my chair very similar to that. Maybe it's a knock off of those ones? I will be looking into it more though, thank you for the suggestion. 3 minutes ago, prairiewindmomma said: I would think I would want to see a spine specialist re: bone spurs and pain management. The spine specialist is the one that told me I was too old for scoliosis surgery. Maybe I should see a different one? Quote Link to comment Share on other sites More sharing options...
kristin0713 Posted July 19, 2022 Share Posted July 19, 2022 2 minutes ago, sweet2ndchance said: I have never heard of that but I do have a pillow type thing in my chair very similar to that. Maybe it's a knock off of those ones? I will be looking into it more though, thank you for the suggestion. The pillows and rolls are helpful but what really makes a difference is the stretching routine and press ups and knowing what to do, how to move etc during a painful flare up. 2 Quote Link to comment Share on other sites More sharing options...
sweet2ndchance Posted July 19, 2022 Author Share Posted July 19, 2022 2 minutes ago, Starr said: I have a friend who had very serious back surgery for a large curvature in her 40s. I would be seeing the top surgeons before I gave up. It was months of healing but her life is hers again now that it's done. Your mental health may also be related to living with pain. I'm so sorry that you are miserable. I'm limited in what I can do based on insurance. I am on disability due to my back and my mental health. My mental health is definitely affected by my pain but there is also so much more to my mental health than just pain which is why my gp is always so concerned with my mental health. Doesn't help that she was running late that day and we were also in a hurry to get to another appointment so my back pain, which had just started at the time, was kind of lost in the shuffle at that appointment. I'm hoping this next appointment will be more like a normal appointment with her and not so rushed Quote Link to comment Share on other sites More sharing options...
kristin0713 Posted July 19, 2022 Share Posted July 19, 2022 I just did a quick search on YouTube and there are a lot of videos explaining the McKenzie method. I highly recommend checking them out. 2 Quote Link to comment Share on other sites More sharing options...
EKS Posted July 19, 2022 Share Posted July 19, 2022 Is it possible that what you are describing is sciatica? 3 Quote Link to comment Share on other sites More sharing options...
lmrich Posted July 19, 2022 Share Posted July 19, 2022 One thing that has helped me a lot when trying to get out of bed is to lead with my shoulders. Other times when I have had bad back pain, walking in the water at the pool has been helpful - of course just putting on bathing suit is painful but the walking in water was very calming. I am going back to the doctor this week and demanding (or asking real nice) for a MRI. I hope you get some relief. 1 Quote Link to comment Share on other sites More sharing options...
sweet2ndchance Posted July 19, 2022 Author Share Posted July 19, 2022 1 minute ago, EKS said: Is it possible that what you are describing is sciatica? It could be but it's not quite the same as what I was told was sciatica in pregnancy. That went from my back through my bottom and into the back of my legs and was a burning pain. This is a sharp pain that goes around my hip and into the top of my thigh. I have definitely thought about it being sciatica despite being different. Quote Link to comment Share on other sites More sharing options...
scholastica Posted July 19, 2022 Share Posted July 19, 2022 Look into the Psoas muscle and see if that’s where the pain is originating. The other thing that comes to mind is bursitis. 1 Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted July 19, 2022 Share Posted July 19, 2022 I highly recommend getting regular massage therapy. It has helped tremendously. If I go regularly ( once a month) it has helped me so much. My massage therapist uses a few different types of massage techniques based on how I feel and how my muscles feel to her. I am on my feet all day with my job ( dog grooming and dog massage therapy) and this keeps my body going. 1 Quote Link to comment Share on other sites More sharing options...
Ausmumof3 Posted July 19, 2022 Share Posted July 19, 2022 I think I’d be wanting some scans and stuff with a specialist to make sure that the pain isn’t reflective of something new going on inside? If that’s affordable. I’m sorry insurance costs is an issue here. 😞 1 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted July 19, 2022 Share Posted July 19, 2022 (edited) EDS with mild scoliosis here. What you describe sounds like a herniated disc or a bulging disc. I think a bone spur is equally possible. I have numerous bone spurs with nerve impingement and have suffered with a bulging disc, and dh had a fully herniated disc—the new pain you have really does sound like one of these. My recommendations: —MRI to see what is causing the new pain. Insist on it. —Definitely a second opinion about surgery or other helpful interventions. —Most definitely physical therapy. The only way to decrease pain effectively with EDS is with strong muscles. Everything else is a bandaid. It’s good to have all the pain relief options, but do so WITH ongoing strengthening. Edited July 19, 2022 by Harriet Vane Typo 5 Quote Link to comment Share on other sites More sharing options...
Katy Posted July 19, 2022 Share Posted July 19, 2022 With any kind of new, severe pain you need a doctor to evaluate. 3 Quote Link to comment Share on other sites More sharing options...
ScoutTN Posted July 19, 2022 Share Posted July 19, 2022 Yes, see a doc and get an MRI asap. Sounds like the kind of pain I had with a herniated disc. 1 Quote Link to comment Share on other sites More sharing options...
Jann in TX Posted July 19, 2022 Share Posted July 19, 2022 Please see a back/spine Dr as soon as possible-- this is nothing to mess around with. I almost waited too long! I ended up having a bone spur poking into my spinal cord in addition to degenerative disk issues. No wonder I was 'clinically depressed'! The relief immediately after surgery was amazing-- physically AND mentally!! Too many Drs cover up cronic pain depression with medication/therapy instead of finding and treating the cause! If I had waited longer before pursuing a surgical option I could have become paralyzed AND could have had unbearable pain the rest of my life. 5 Quote Link to comment Share on other sites More sharing options...
sweet2ndchance Posted July 19, 2022 Author Share Posted July 19, 2022 I'm feeling better today. Just some muscle tension in my back but most of the pain has gone away or at least gone back to normal levels for me. I've been able to get up and do some cleaning up in small spurts today. We see the doctor tomorrow and I will talk to her about all the things mentioned here. I'll update after I've talked to her. 1 Quote Link to comment Share on other sites More sharing options...
Kanin Posted July 19, 2022 Share Posted July 19, 2022 15 hours ago, sweet2ndchance said: The spine specialist is the one that told me I was too old for scoliosis surgery. Maybe I should see a different one? Absolutely! 2 Quote Link to comment Share on other sites More sharing options...
kbutton Posted July 19, 2022 Share Posted July 19, 2022 16 hours ago, Starr said: I have a friend who had very serious back surgery for a large curvature in her 40s. I would be seeing the top surgeons before I gave up. It was months of healing but her life is hers again now that it's done. Your mental health may also be related to living with pain. I'm so sorry that you are miserable. I have heard of this too. I think you need another opinion someplace relatively big and reputable even if this doesn't turn out to be scoliosis pain. My son just had his double curve fused (CTD also), and his QOL went quite downhill when he went from stable and moderate to suddenly pretty severe. His fusion went very well. 13 hours ago, Harriet Vane said: EDS with mild scoliosis here. What you describe sounds like a herniated disc or a bulging disc. I think a bone spur is equally possible. I have numerous bone spurs with nerve impingement and have suffered with a bulging disc, and dh had a fully herniated disc—the new pain you have really does sound like one of these. My recommendations: —MRI to see what is causing the new pain. Insist on it. —Definitely a second opinion about surgery or other helpful interventions. —Most definitely physical therapy. The only way to decrease pain effectively with EDS is with strong muscles. Everything else is a bandaid. It’s good to have all the pain relief options, but do so WITH ongoing strengthening. I agree. There is a scoliosis-specific type of PT called Schroth method, and it's much better than regular PT. You might also be offered chiropractic, and if you have a good one, it can be helpful. It was listed as an alternative to surgery for my son, though we already all see a chiropractor. 1 Quote Link to comment Share on other sites More sharing options...
sweet2ndchance Posted July 19, 2022 Author Share Posted July 19, 2022 I just looked up the Schroth method and the nearest certified pt that sees adults is 5 hours away. Dh knows a local pt and he is having him check if maybe there is one closer one that isn't listed. Locally, they have never heard of the method. Not surprising. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted July 19, 2022 Share Posted July 19, 2022 12 minutes ago, sweet2ndchance said: I just looked up the Schroth method and the nearest certified pt that sees adults is 5 hours away. Dh knows a local pt and he is having him check if maybe there is one closer one that isn't listed. Locally, they have never heard of the method. Not surprising. Two options One is to see the officially certified PT once a month in person. I have done similarly before. The PT gives you an exercise “prescription” which you scrupulously follow. The other option is to get a local PT who is willing to consult with the Schroth PT and/or to learn about the approach. At the end of the day, though, ANY strengthening is better than none. Especially with EDS. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted July 19, 2022 Share Posted July 19, 2022 13 minutes ago, sweet2ndchance said: I just looked up the Schroth method and the nearest certified pt that sees adults is 5 hours away. Dh knows a local pt and he is having him check if maybe there is one closer one that isn't listed. Locally, they have never heard of the method. Not surprising. It's not everywhere--it's an exhausting specialty. The two people who do it locally have only a percentage of their caseload as Schroth because it's physically demanding. They also see only pediatric patients. Honestly, if you can work something out, it might be worth it to drive. It might be something where you could have a consultation and then have a program put in place with some remote monitoring. My son benefitted greatly, and his round of it was for surgery prep--I think that doing it made his surgery more successful. Quote Link to comment Share on other sites More sharing options...
kbutton Posted July 19, 2022 Share Posted July 19, 2022 2 minutes ago, Harriet Vane said: One is to see the officially certified PT once a month in person. I have done similarly before. The PT gives you an exercise “prescription” which you scrupulously follow. The other option is to get a local PT who is willing to consult with the Schroth PT and/or to learn about the approach. Yes. This. Schroth is rare enough that I wouldn't be surprised if once a month appointments with exercises is not unusual. Quote Link to comment Share on other sites More sharing options...
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