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Hi. I’m new to the whole support group thing. I’ve been

Hi. I’m new to the whole support group thing. I’ve been having chronic back pain for just over a year now. I’ve been diagnosed with SI Joint dysfunction and hyper mobility. I am also getting tested for EDS, but not sure about it. It has changed so much over the year from just a dull pain in my right SI Joint to my whole lower back to my mid back to my shoulders, making it the whole back after about 6 months. Now it is mainly shoulder/ shoulder pain upper back pain and it is like all my muscles are fighting against each other. I have throbbing, tightness, dull, sometimes sharp, and have experienced a lot in the past year. I have been through a spinal surgeon, my regular physician, 3 different pan management doctors, an ovarian cyst surgery, 4 x-rays, 3 mris, cryotherapy, bowen therapy, massage/ cupping therapy, 2 different PTs, and some more stuff. I am still in high school. My pains not as bad as some of your guys I have read on here, but we also can’t feel each other’s pain so I feel that mines pretty bad for me. I didn’t go to school all last year and am struggling to stay now. I am finally getting myself sent to the Mayo Clinic because I don’t want to deal with the pain anymore and I haven’t been getting good results from almost anything. My friends were supportive at the beginning of all of this, but are now starting to loose empathy for my problems, which is okay, but they aren’t telling me at all that it’s bothering them even though I think it is. I asked them, but of course they said no. It’s hard for them to relate I guess, so I think I am going to stop talking about it to them because they really don’t understand. My massage therapist recommended coming into a support group not be able to relate to others and where people understand the things I am going through because there’s only a couple people in my life that I can talk to about it and they still don’t really understand. I know a year is nothing and I could’ve had this pain for a lot longer, but I just want my life back as a teenager. I barely do regular teen things with my friends and when I do, I’m in pain, but I try to suck it up because I hate missing out. Sorry about such a long post. Would love to have some responses or feedback or any advice <3

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Raine14's picture
[19270]
Oct 9

Welcome jewels! I think we don't realize how much we need to talk to other people going through similar things until we actually do, and then it's such a relief because they "get it."
I was 12 when my chronic migraines started (I'm 29 now) and like you I tried to tough out the rest of middle school. My friends were initially very supportive, but as time went on and nothing worked to ease the pain, they slowly drifted off. I never blamed them. It wasn't like they didn't believe or empathize with me, but more like there was too big of a gap between our lives. They were doing teen stuff and I was doing medical stuff. However a few girls stuck with me. One had a mom with an autoimmune disease so she was used to accommodating my needs. Another just took it in stride, never talked to me about my pain, but delighted in going to the movies with me or updating me on the "outside world."
I never made it to high school. My parents choose to home school me instead, which honestly was a great idea. They were able to tailor the lessons to my particular strengths and I got the rest I needed and didn't have to deal with all the environmental triggers that came with school. I DID make it to college though. Online courses were a godsend.
I have also dealt with all sorts of people who don't believe my pain is real, including my first neurologist who told my parents I was faking my migraines to avoid going to school, an uncle who doesn't believe headaches are real and all I really need is a social life to be "cured," a gynecologist who told me my pelvic pain was "all in my head" even though I had just finished a 2 day stint in the ER, and a sister who thinks I should be able to just push through it and get on with life. I once almost punched an idiot who thought giving me a bear hug after a major abdominal surgery was a good idea.
An anti-inflammatory diet sounds like a great idea. You might consider adding turmeric supplements to see if that helps. Turmeric is an anti-inflammatory and has been a huge help for my (admittedly very mild case) hypermobility syndrome. A topical CBD oil might also be helpful for your back, if you haven't tried it already.
I hope you enjoy your time here with us! And I hope you find relief soon. Sorry for the long post in response to your long post ;) Sending *hugs*

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[40]
Oct 10

I’m so sorry you’ve had your migraines for so long. I have a friend with chronic migraines too and she is just miserable and has only had them for 6 months- 1 yr.
I know! I feel that just having your response and seeing other people’s post on here I already feel less alone. It’s hard when most of my friends don’t understand and just want to do regular stuff without me regulating them, which I don’t blame them for.
And I totallllyyy understand about the people telling you it’s not real. Since I don’t have a complete diagnosis and/or it’s not as simple as, say a broken arm, people don’t get where I am coming from and a doctor had tried to tell me for 5 minutes straight that I was depressed.
I actually do take turmeric supplements (I have yet to see a difference in my pain) and also use cbd massage oil 1-3 times a week + try to take it regularly orally. It has seemed to help, but I don’t really know. I don’t take any prescriptions as of right now because no pain meds help, but do take a good amount of supplements to try to get the natural route of pain relief. Hoping it helps more as it builds up in my system.
Thank you so much for the warm welcome! I hope you find relief as well. There I go with another long response XD Sending hugs right back!

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Raine14's picture
[19270]
Oct 10

I'm so sorry to hear about your friend! (On the other hand, having a friend who also has chronic pain can be . . . I don't want to say "nice", lol, but maybe comforting? It's someone who can easily connect with your experiences which is comforting.) Feel free to tell your friend that another migraine sufferer highly recommends the "Headache Hat," especially if she gets relief from pressure and cold. It's not a fix-it, but it feels soooooo good.
It can be really rough dealing with a doctor who won't believe you. Or thinks they know better than you do. Can depression create physical pain? Absolutely, but it's on such a minor scale compared to physical pain and really isn't consistent. Do you have a good doctor who has been advocating for you, like a primary care or pain management doctor? Sounds like, at least, your massage therapist has your back (pun totally not intended! But it made me laugh, so I kept it in).
No relief from the turmeric! Ah, and here I was hoping it might be that miracle spice. Gosh darn it! But a cbd massage sounds amazing. Well, any massage sounds amazing. So as long as it doesn't cause you pain, it's probably helping something, even if it's just loosening muscles that get overly tight to compensate for the pain. Does anything give good relief? What about lying down or resting?
When did you start the anti-inflammatory diet/supplements? Just curious if you're noticing any differences with certain foods yet or if it's still too early.
I think you'll do just fine here ;) Feel free to check out some of the other groups too. Oh! And Google "Spoon Theory" if you haven't heard of it yet. It's a great resource.

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