HFA/EDS husband extreme pain and depression--help!

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hey everyone,

it's my first time posting here. I'm 30 and my husband's 32. we both have aspergers (him a little more than me, maybe) and he has ehlers-donlos syndrome, which for the past two years has been causing him extreme daily pain. even though we are both prone to depression, we used to have a lot of fun together and feel hopeful about life. but with his increase in pain, he has become almost suicidal, talking every day about how he wants to die and has nothing worth living for, and that he is literally "living in hell" because existence is just pain and anxiety for him. we meditate, exercise, get acupuncture, etc, but none of it seems to help enough to make a difference. at this point it's constant meltdowns, tears and despair, with an occasional "good" day that is still pretty bleak.

I alternate between trying my best to be a patient partner/supporter, and breaking down myself--terrified of facing a life of constant pain and depression, alongside him. even though our material circumstances are more stable than they've ever been, it always feels like we're barely surviving.

does anyone else on here have ehlers-donlos or other chronic pain? is there any hope?

guess I just needed to tell *someone* what we're going through, even if that someone is internet-strangers...our lives look so normal and lucky from the outside, nobody sees what's really going on.

You've come to the right place.

Maybe you should also go to a Ehlers-Donlos support site.

I hope you could find a way to alleviate the pain at least for a little while.

Hi and welcome!

I'm sorry you are both dealing with that level of stress... I have ASD and chronic pain due to Lyme disease, and was suicidal for decades. I know it was really difficult for my husband too (and a factor in our divorce!)

I assume he's been in counseling? That's really the only thing I know to recommend - it's helped me a lot at various times when I've felt hopeless!

I know every situation is different, but in my case there was a constant feeling of guilt and helplessness, knowing that I was a burden on my husband, and that there was nothing I could do about it. And on top of that, a feeling of being constantly overwhelmed, with expectations placed on me that I could never hope to live up to. (Socializing with his friends and family, traveling, going to loud concerts, doing things that were fun to him, but a nightmare for me!)

Maybe your husband is feeling some of those things too - plus the bitter unfairness of having to live with multiple disabilities, that he didn't ask to have. And I know from my husband's perspective that my issues weighed heavily on him, so I feel for you as well in this situation!

In retrospect, I wish my husband had told me that was near his breaking point - instead of pretending to be okay with it, until the day came when he couldn't take it any more. I wish he had pushed me harder, to get the help I needed - for his sake, if not for my own. Your husband needs professional help, and you need to not be the only person supporting him emotionally through this difficult time.

I don't know if any of what I said is relevant to your situation, but I wanted to share it just in case! Hope things look up for you guys soon... I got help, and haven't felt suicidal for 4 years now, so I promise it can be done!

Hi. I'm new to the site, and I guess I hope it's okay to still answer. I've never been diagnosed with Ehlers-Danlos Syndrome, but I suspect I might have it because I have fingers and toes that dislocate all of the time, and I also have chronic pain. I have a friend with EDS, and he said my symptoms sound similar to EDS.

I've never been to a doctor for EDS.

Anyway, I thought I would just tell you that in 2011, I was able to stumble upon an herb that really helps a great deal with my pain. It's called Burdock Root (Arctium Lappa). You can buy it online in a pill form. I buy it from a company called Oregon's Wild Harvest, and it's sold at my local food co-op. It hasn't gotten rid of all of my pain, but it is sooo much better that I'm grateful I've found it. In particular, my feet, tailbone, hips, upper arm, monthly cramping (obviously not an issue for your husband!), and an area near my rib cage are almost pain free, as long as I don't exert myself too much. If I do exert myself too much . . . say I decided to walk around the fair for the day, and my feet were in a lot of pain at the end of the day . . . when I rest the painful parts, the pain magically goes away after some hours. That never was the case with me before the burdock root. I was either in pain, or I was in agony.

Oddly, the pain in my back and neck remains unchanged.

But my quality of life is still greatly improved!

I wonder if your husband might want to try burdock root. It is fairly safe, but he would have to, of course, research it himself, and make sure it's okay to take if he's taking any medications or has any other health conditions that might not mesh well with the burdock root. (People all over the world eat burdock root, as a vegetable. I like the taste of it when I can find it at the store! So mostly it should be okay. But everyone is different, and you should consider allergies, etc.)

I very much understand his despair. I hope he can find some relief, some way or another! If some of his pain can be relieved, I bet some of his depression will lift, also.

I wanted to add, that the muscles in my back and neck do not relax on their own. They feel the same as your bicep feels when you flex it, only they're like that all of the time. For them I have a type of massage technique that I learned that gets the muscles to relax one at a time. It is a huge pain and takes a long time, but it is also a huge relief . . . especially when I am able to get the muscles along my spine to relax. I don't know if your husband has muscles like this, but if you would like the details about the massage, let me know! I would be more than happy to let you know how it's done.

Take care.

I can relate on the pain issues - I was born with two chronic pain conditions, and developed a third in my mid twenties. I find aggressively pursuing a medical solution, not just a treatment, really helps keep your head above water. If you psychologically know you are doing something to make yourself well, you're going to get better, you are not just going to live with the pain at this level forever and this will be all there is, it helps keep up hope. I believe it's important there to find doctors who support you - I just had radical major surgery last week on the possibility that it could help my pain issues. Other doctors may have fought me on this and insisted it was too extreme, but luckily the surgeon who did the operation was understanding and knew that this pain was damaging my quality of life and this could help, extreme or not.
I also found it helpful when I was quite sick before the surgery to consciously take pleasure in things I could do, and not focus so much on all the things I couldn't do. With the right mindset not everything in life is bad even in pain. If I could manage to spend a few hours cooking spectacular meals and enjoy that, then that was at least something.
On medications - I don't know what they prescribe for your husband's condition in specific, but I found chronic pain medications to be counterproductive. I was on morphine, then Oxycontin at one point, and was self-medicating the gaps with alcohol. They also put me on several antidepressants that interrupt the brain's ability to interpret pain signals from the body - all of this led to me being basically high constantly and often unable to get out of bed. Such medications pack on weight, push blood pressure and cholesterol up, and generally leave the patient feeling doped and unable to engage with life. This can open a person up to depression. Something less intense like an anti-inflammatory may help the bodily pain while leaving the mind intact.
I'd say keep going - maybe try something like a rehabilitational physical therapies program or similar. You could try psychological areas of attack such as CBT techniques (studying buddhist philosophy helped me in separating myself from the pain, for example). There are options out there that will help his condition. You just may not have found them yet.

Hello,

I have Ehlers-Danlos Syndrome (in addition to Autism). The pain is indescribably excruciating, so it makes sense that he's feeling this way. What is being done to manage his pain? If he isn't already, he needs to be doing physical therapy, but be careful, if the PT isn't EDS aware, the therapy could cause more damage. A lot of EDSers aren't affected by certain painkillers, so if he's taking something that isn't helping he needs to be switched. The one I hear mentioned the most on the EDS forums is the Fentanyl patch. Bracing the joints and Kenesio taping the joints is also helpful. Mobility aids can and should be used. These can help reduce the pay-back pain our bodies deliver after a day out, or a simple trip to the store. EDS carries with it a lot of comorbid conditions, so some of his pain may not be directly related to EDS. For instance, I also have Mast Cell Disease, which (among other things) causes bone pain and joint pain. Inspire.com has the main EDS forum, you should check it out.

Mahonia I have only read your original post, no replies to it. I'm so very sorry you and your husband are in such pain and anguish. I wish I had more help and advice for you, but I have no idea what EDS is. I can tell you I've been through many terrible things, and so I can empathize. I will be praying for you and your husband.