Tired of pain and fatigue

I haven't written about the muscle pain and immediate fatigue lately, but they haven't gone away either. I just don't like to focus on it. My PCP Dr. Armstrong told me last time I went that we might never know what is causing it. I guess I sort of felt he had given up on me, so I stopped going. He sent me to an neurologist last fall but I had a completely normal exam and the neuro didn't seem to *listen* to me very well. I told him about muscle pain of a seven-of-ten-scale after about two minutes of movement such as walking, carrying, holding or standing, and he suggested a fifteen minute long bicycling test to see if my muscles would act funny. I felt like crying. I was too embarrassed to point out that in this condition I wouldn't be able to tolerate exercising that long. He told me I have an umbellical hernia that needs surgery base on the fact that my muffin toppy belly pooches up when I go from lying to sitting. I can't imagine having a foot long hernia with no pain at any time, it just doesn't make sense.

Anyway, we took a vacation to New Mexico for Christmas and the travel really wiped me out despite the fact that I buckled and asked for wheelchair escorts at each airport. I'm glad I did. I was exhausted during the whole trip, and it took at least a week to recover physically when we returned. I feel like I'm ninety. I worked with a physical therapist for five weeks without improvement.

I feel like I'm in the middle of a fixed delusion about conspiracy and nobody can believe what I say or accept my reality. I've entertained the notion that my pain tolerance is just decreasing with age or fatness, but no other person I know of my weight or age seems to be having these problems. I've asked my NP/Psychiatrist for a disability placard, and she's signing off for one. She thinks it is the risperdal, so I'm switching to seroquel. She doesn't know if this would get better if I stop risperdal, but she thinks it may stop progressing.

So here I am, 18 months after I started having trouble with my 45 minute workouts. At this point I get burning muscle pain and cramping sensations (but not spasms) in my legs and back when standing or walking for over a minute. I get cramping in my arms if I hold the phone, or carry a water bottle or push a grocery cart. Sometimes my legs or feet cramp for a long time after a short walk of maybe thirty yards from the parking lot to my desk. My muscles also get stiff more easily, making it doubly painful to walk after resting. I am often exhausted at the end of the day. I have to sit down to sautee mushrooms because I can't stand for the four minutes it takes without significant pain that forces me off my feet. I have begun sitting in inappropriate social circumstances where everyone else is standing. At the psych hospital's nursing station, or in an AFC home where a client is touring. I'm in enough pain walking that I look longingly at mobility scooters and wheelchairs online.

I'm losing my ability to stand and walk and nobody knows why. It seems to be getting worse again, and I'm starting to fear for my job, which is periodically active. Nobody knows why. None of the tests come back abnormal. All the evidence says that I'm making it up, but I'm not.

It's starting to feel like a slow nightmare I can't wake up from.

I know I sound like a whiney toddler, but sometimes I just have to say it or I'll burst.


Krista said...

You are not whiny. Not one bit. You have had bad doctors. I have stood by too many friends and watch them struggle. They end up blaming themselves for their pain. And yet, one had fibromylagia. One had lupus (that was a heart breaking diagnosis, but it was one, at least). Another ended up finding out she had Celiac.
Please don't give up trying to find out why. This is NOT NORMAL. There is a reason, and a conscientious dr, or a team, can find it.

I tend to think this is a manifestation of sexism in our society. When the few males I have known started complaining of pain, they were immediately evaluated and causes determined. Women tend to get written off. It may be unintentional, but I still see it happening.

Anyway, I need to stop ranting, but the sound of the post was very much resignation and exhaustion.

Hang in there!

Anonymous said...

I agree with the previous commenter. I think there has to be some explanation for your pain. You may never know what that is (but you may be able to find a cause, too). I suspect that there is something that can make you feel better, and you deserve to feel better.

I've been reading your blog for a while now, I am a social work major. And it's very obvious to me that if you're feeling pain, then it should be addressed. I suffer from a chronic nerve disorder which is very painful, and I have seen how gender can make it even more difficult to get treatment. Please don't give up on finding a treatment that works.

If I can be of any help, please let me know. You can email me from my blog

Ana said...

Good God Mary! I am so sorry about the pain you are in. You are the very last person to make up pain, you have always worked very hard and tolerated so much. I will be keeping you in my thoughts and prayers. I hope something...anything is found that can be treated.

Alix said...

I just wanted to say thank you for posting this, and you are so not alone. I have the exact same symptoms right down to the pooching upper abdomen. I know I have PCOS, but I've been told this is not a part of PCOS. It's crazy and frightening and horrifying and maddening, especially when my bloodwork all comes back more or less normal (for someone with PCOS).