Just need a place to collect my thoughts

Even if no one reads this I just want to vent to myself and to whomever wants to read this, I feel like I my body is literally trying to kill me. I keep trying things that should help and nothing ever does I’ve never been so tired from doing nothing in my life. I go to work (I work a full 40+hour job 5 days a week) and come home do wifely, motherly, and dog motherly things and that’s all that I do but I can barely keep myself up long enough to do anything else. My body is dragging itself along and the last time I felt this bad was before I got diagnosed and started taking all of these meds that are supposed to help. Maybe I’m just tired of pain management without any drugs and trying to stay healthy but I still am dropping extreme weight by the week and I’m literally wasting away in front of everyone and I’m afraid my body isn’t going to be able to withstand this one this time.

Hey Lee Ann,
I dare say you have been through all of the medical ‘fun and games’ to have been diagnosed in the first place but maybe a re-assessment is in order (and believe me, I know this is probably the very last thing you want to hear). For those of us with rare conditions often we simply continue the same way we have, often for years, because

  1. We’ve managed ‘OK’ with the regime we’ve been on.
  2. We neither want (nor need) the drama of ‘reinventing the wheel’ yet again.
  3. We don’t want (nor need) the judgements of others.
  4. It’s just all too hard.

There are always medical advancements occurring or options that may not have been considered previously. Your pcp may be able to run blood test, do scans or other tests to rule out other contributing factors. I know for myself I simply put everything down to my ‘known’ condition and thinking “Just put up with it and keep going”, when in fact a pcp visit and scan showed there was an issue. With me being ‘Me’ I was just going to ‘keep going’. It was my wife who put her foot down and it turns out I was damn lucky she did as the issue I was minimising as ‘same old, same old’ turned out to be not so ‘same old, same old’ and could have ended up being life threatening.

Look your dr may well say the same things again, but to be safe, go get it all checked out.
Well, that’s my opinion.

(P.S. See, someone else does read this. LOL)

Merl from the Moderator Support Team

I appreciate the read and the careful thought that went into your response but I greatly appreciate the empathy, I did get some answers thankfully yesterday and feel more at ease. This isn’t over and done by a long shot but I have a direction to go now and I seem to have found something that I’m benefiting from so we are going to keep that going as long as possible. I also got referred to many more specialists and that will help as well I think, I am on the road to answers.

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SEE, just a little bit of direction can help.
Hope is a wonderful thing. NEVER lose hope.

Merl from the Moderator Support Team

I’m sorry I missed this. What did you decide to try?

You may also want to sit down with your spouse and be very clear on how this is impacting you and see what changes can be made in order improve your situation. For example, you may need to lie down for a few minutes when you get home from work. Small changes can make big differences.

Hi , My wife and I are 62 and raising 3 beautiful granddaughters due to their parents not wanting them. My wife is a cancer survivor. I have been on disability since I was 41 from spinal injuries etc. The fatigue and brain fog from ss is killing me. As hard as I try to get things done and keep the kids happy its nearly impossible. My wife is down to one lung so its as hard on her as me. We just keep the faith , visit drs and take meds its really all I can advise you. Being diagnosed with ss was life shattering to me. Some symptoms were old and undiagnosed previously. The more I research it the more I worry. Just keep on smiling , I do as best as I can’