By Bridget on Wednesday, March 28, 2001 - 11:52 am:

I just need to vent here. My husband has been in pain for years. He tried to start prolo, and not only passed out, but stopped breathing, and they had to do CPR. He ended up with a pacemaker, and has really declined since that procedure. His whole left side feels out of whack, sore ribs, sore chest, shoulders, etc. Just more and worse of all he had before all over, i guess some of you know how it is. He saw a new physical therapist who specializes in hypermobility and has seen 2 of our kids already. She brought up the possibility of getting disability. This won't work for us, as the Social Security would only provide 1/3 of what he makes, and we have EIGHT children. His life is #$!! because the working is killing him, but we don't see any other options. He really values the life we have with me at home home-schooling the younger ones, i couldn't earn much anyway.

He's a corporate controller, and having a hard time at work because of the pain, which causes mental fog. His whole life consists of trying to get up ( a long hard process) and work a full day. Because he starts later in the day, he usually works pretty late. THere is no life outside of this, not to mention the loneliness anyway of not being able to relate to people. Sometimes we feel we're living in some kind of alternate universe, if you know what i mean. :(

His only option seems to be to try the prolo again once he's a bit more recovered.

Bridget, Tucson

By Lucy on Thursday, March 29, 2001 - 09:00 am:

Hi Bridget,

I completely relate. I have EDS3 and have worked in the corporate world with it for the past 7 years - I have been to hell and back. First of all, does your husbands company have any kind of long term disability policy? If so, then he should take it. The stress of trying to "pull it off" like a normal person only made things worse for me. I too had a very tough time with prolo. The pain was excruciating and set me off on a string of opiate based painkillers and valium. What did help was when my doctor realised that the reaction I was having was too much and he injected me with an anti-inflammatory solution to calm things down. I think that the reaction comes about as a result of the body adjusting to the tightening of the prolo - there is a chain reaction - if a joint is tightened then the next one along will react too - the old leg bone is connected to the knee bone syndrome! Your husband should also communicate his problem to his HR department - someone he TRUSTS. There comes a point when money cannot be the driving force. My husband and I have gone through a very similar experience. Pain causes depression and your poor husband sorely needs a break - does he have any vacation time? Look into massage therapy too - prolo can exacerbate spasms which can be relieved by massage - it needs to be done by a physical therapist though. I do know what you are both going through, but remember, every problem has at least 12 solutions. We've had to move in with my parents in law while I get treatment - it's not ideal, but I'm able to stop work and focus on treatment and rest. Please feel free to email me if I can help in any way. Take care - Lucy