EDS, Addison’s, and Diet

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danielbwest
danielbwest Posts: 42 Member
in Health and Weight Loss
Good morning everyone,
Over the past few months, I have gained about 20-30 pounds from taking steroids to treat Addison’s disease. I am unable to do much physical activity, due to cervical instability, spinal stenosis, a progressed tethered spinal cord, and necrosis in both my hips. As you might imagine, this has made it difficult to be active. I have 25+ chronic conditions, and up until I became chronically ill two years ago, I worked out 3-4 days a week, was an active runner, and ate clean. I’ve had to modify my diet quite a bit, as I have become intolerant to high histamines foods, wheat, and diary.

If you have any suggestions relating to diet or exercise that has worked for you, I’d love to hear it. Since I’m limited in what I can do physically, if you have been in the same boat, what has worked for you? I’ve tried to walk as much as possible without my hips or back getting too made at me.

Thank you!

Replies

  • WholeFoods4Lyfe
    WholeFoods4Lyfe Posts: 1,518 Member
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    Do you have access to a pool? Swimming is a great, low-impact exercise.
  • nooshi713
    nooshi713 Posts: 4,877 Member
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    Can you swim? That is low impact for your joints. You can focus mainly on eating foods that you can tolerate and stick to your calorie goals.
  • WholeFoods4Lyfe
    WholeFoods4Lyfe Posts: 1,518 Member
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    Also, at the risk of getting woo'd, have you looked in to an Autoimmune Paleo diet? I see that you eat/ate clean, so just thought I'd mention it.
  • nvmomketo
    nvmomketo Posts: 12,019 Member
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    michelle172415 wrote: »
    Also, at the risk of getting woo'd, have you looked in to an Autoimmune Paleo diet? I see that you eat/ate clean, so just thought I'd mention it.

    I know a few people who have had varying levels of autoimmune improvement using that diet.

    The pool is probably a good bet. That being said, I have mobility issues myself, and I hate the pool so I tend to walk or exercise "weekend warrior" style - I do an activity and then pay for it for a few days and then do it again. ;)

    Keep an eye on blood glucose. I've been on steroids a few times and I eventually developed insulin resistance that I believe was helped along by the meds (along with my higher carb diet).

    Hang in there.
  • danielbwest
    danielbwest Posts: 42 Member
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    Unfortunately, I do not have access to a pool; I wish I did. I have looked into AIP. I’m going to check it out. I know several people w/EDS and mast cell problems who have benefited from that diet. I have resistance bands and I may get a couple pieces of Pilates equipment. Pilates has helped me in the past, and it is relatively low impact.
  • yirara
    yirara Posts: 9,554 Member
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    michelle172415 wrote: »
    Also, at the risk of getting woo'd, have you looked in to an Autoimmune Paleo diet? I see that you eat/ate clean, so just thought I'd mention it.

    Careful there. Salt wasting is a thing with Addisons. Just eating paleo without looking at the details of it, and the influence on electrolytes could be a real problem if the glycogen stores get depleted.
  • Gisel2015
    Gisel2015 Posts: 4,150 Member
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    @danielbwest

    Daniel,

    Have you considered asking your doctor for a referral to a physical therapist? They can work with you, assess your limitations, determine what is best for your condition, and recommend some home exercises.

    Working with bands, and maybe trying some Pilates to help with flexibility and mobility, sounds like a good idea, if you can do it. But, I think that the PT's evaluation would be very beneficial.

    With respect to your hips, have you seen an orthopedic doctor? The constant use of steroid does a lot damage to the joints, maybe a hip replacement could help you to improve your mobility, if your body can take the surgery.

    Sorry that you find yourself in such a condition after being active for so long. I hope that you can find a suitable exercise routine soon.
  • danielbwest
    danielbwest Posts: 42 Member
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    We have been working for the last month or so to get me added back to my dad’s insurance, as a dependent. I have already been verified, so we are just waiting on the insurance to become officially active. I have found a PT here in Austin that treats patients with EDS, and once my insurance is good to go, I’ll be working to set up a meeting with her. My parents and I will be traveling to Maryland soon, following fundraising to have two operations at once. I’ll be having a posterior cervical decompression, an expansive cervical lamniaplasty to treat my spinal stenosis, and a tethered cord release. There are only 3-4 neurosurgeons in the US that can reliably treat patients with EDS. Unfortunately, Texas does not have any adequate neurosurgeons who are familiar with my connective tissue disorder.

    As long as my insurance is active, I’ll be making an appointment with an orthopedic surgeon here in Austin. In addition to EDS. I also have Osteogenesis Imperfecta, a brital bone disease. I need to have an MRI of my hips, and possibly a bone density scan as well. My left hip definitely has necrosis, and based on my symptoms, it appears I might have it in my right hip as well. The steroids have definitely progressed the necrosis, so I would not be surprised if a hip replacement is in order for my left hip, and a decompression to drill out part of the dead bone in the right.

    If there’s one thing I’ve learned over the past two years, it’s that this is a process.

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