I have to learn to keep my shut at doctor's offices.

[DammitJanet]

I think I am doing the right thing by telling doctor's the way I am feeling but obviously that isnt the best way to be. Especially when I dont see the same doctor every time and I hardly ever see the psychiatrist who had been seeing me for years before he joined this new huge practice. I see him maybe 3 times a year now. I think I am going to have to insist on making my appointments so I can see him and no one else. Sigh.

Lately I have been having this issue with being extremely tired maybe 3 days out the week but I fall asleep fairly early in the evening but wake up around 1 or 2 may 3 am and then fall back asleep around 7 or so and am just so incredibly tired I cant keep my eyes opened until about 3 pm. Its awful. I think it has something to do with my fibro because I am also having awful pain in the trigger areas like on the outside of my arms and all around my upper chest and some spots on my back. This is almost a sure sign that my fibro is hitting me.

I asked the doctor if there was anything I could take on the days when I just couldnt stay awake because it wasnt every day and there was simply no way I could function on the days when it did happen. Oh lord that was a mistake. She started in on how everything I take was a downer so naturally I was sleepy and would just be sitting there practically comatose. Im not! I dont sit in one spot drooling. She has no idea what Im like. Heck she sees me for less than 10 minutes 1 time a month.

So she takes me off of my pill that helps me sleep and notice I was up at midnight tonight. I fell asleep at 10:30 and woke up just after midnight. Its 6 am. Oh goodie. She also told me to set my alarm for 7 and then get up every day, take a shower, get in the car and go out and do activities. Go shopping, walk around the mall, go walk the dog for an hour or so around the block, come home and completely clean the house from top to bottom, never sit down on the couch, dont take any naps. Dont turn on the TV during the day.

If I could do all that I wouldnt be on disability and I would be working. This woman didnt even know I had severe joint disease or disc disease. She had no clue that I couldnt stand up for more than 20 minutes at a time. So then she asked me well if you cant stand up for more than that then stand for 20 then sit for 20 and then get up again for 20 and keep doing that. Oh please! She has got to be kidding me. Like I said, if I could do that I would still be working. I was doing that while working! Then she told me to go get a gastric bypass. She must know something I dont know because I have read the requirements to get approved for that and you have to go through a ton of procedures to get it approved and if your doctors dont document everything exactly right, you get turned down. I doubt my doctors would be that accurate. They havent shown they can be accurate enough to get my lab results to me. Or set up referrals to specialists. Do I really think they can keep accurate notes in the format Medicare expects for approving this surgery? No. And I cant change doctors because I am locked in. Lovely little thing.

I am certainly not telling Tony that this doctor says I can do all this because he will just think I am now faking it. By the time I got home last night I could hardly walk. I was so tired yesterday morning I didnt take my morning medications before driving all the way up to her office which is about 40 minutes away. After that appointment I had to get something to eat because I was starving then I had to go to Toysrus and pick up layaways that Cory and I had in there. Oh my heavens I will never do that again. They lost stuff on both our layaways. I sat there for over two hours while they attempted to find them and finally I told them to just stop, I would cancel that part out at the front return desk and buy another one of the same thing from out on the floor. When I got up to the return desk and was looking in my containers because I was going to take back to items, I noticed that I was missing 3 things in addition to two of the things I was going to take back! I have no idea how they could be so disorganized. I have never had that problem with Walmart or Kmart. Wont be shopping at toysrus next year.

 

[SuZir]

I think that problem is that your doctor is kind of right. It does help with sleep issues to have very strict routine and not to let yourself sleep during the day. being active helps. You are having medications that take some stamina out of you. That all is true. Other problem of course is that it is not that easy or even possible to follow her suggestions and like many psychiatrists she wasn't minding your physical problems (that seems to always happen - and also other way around.) I can easily understand why you want scoff off her opinion, but how about if you take a deep breath, try to forget that she was offensive with you and try to think if there could be any way you could follow some of those advises.

Even if you can't be physically active more than certain short periods a day (and try to do that if and when you can), can you do something else to keep you awake during the day even if you feel tired? Are you a gamer at any chance? Console games are good at keeping people awake and don't require much of physical activity. And have you lately had a comprehensive medications evaluation? (sorry, don't know how to express that in English correctly, I mean that one doctor should take a look of all the medications you are taking and if they are all necessary, if they go together and if some of them could be replaced with one other medication that would work to all those problems etc. Idea is to check if there are unnecessary medications, medications that don't go well together and try to lessen side effects. Around here this is done periodically with people who have several medical issues because studies have shown that many people, especially elderly end up with too many complicating medications because of they have so many treating doctors and specialists.)

You are not an old lady yet, you have big part of your life still left. It is imperative to do all you can to do everything you can to keep your functioning level as high as possible so that you can have lots of good years to enjoy your life and watching your grands to grow.

And yeah, do not tell Tony what the psychiatrist said because it seems he often isn't too supportive of you with health issues.

 

[PatriotsGirl]

You are young, Janet, and you do still have so much life left!! I agree with SuZir. Are there some things you can do? Video games are a great idea - husband and I recently broke out our Playstation 2 and have been playing our old video games - it has been a lot of fun.

My latest addiction is Zynga poker on my Android. That could keep my occupied for hours....lol....

 

[buddy]

Back when I was taking pain medications it was such a miracle because I could work full time on them. But there were times I'd fall asleep sitting up, just couldn't keep my eyes open. I didn't realize until I was off them that it really was the pain medication plus the lexapro. I was shocked at the level of alertness that came back but I never could say while I was on it that it was connected because I functioned really well. The trade off was necessary at the time anyway.
Problem is you need medications overall right now, but she should have looked planfully at doses and times and asked YOU what schedule changes you could experiment with etc. Just nixing a sleep medication seems thoughtless and lazy and judgemental.
I can see any doctor not wanting to add another medication to counter symptoms until they knew no other plans would work (this is the first you've reported this symptom, right?). Since you are so young they need to protect you but if you have fibro too, that needs to also be considered. What kinds of dietary changes (not a calorie restricting issue I'm talking about, you know all that......) in terms of pain relief and energy? I literally was able to stop narcotic pain medications and cut any prn pain medications when I stopped all caffeine. A scleroderma support group I went to had many people who suggested that and it worked for several of them. Surprisingly I was able to be more awake without caffeine.
(too much information moment: HUGE benefit was I had absolutely zero breast pain at pms time no lumps when I stopped caffeine. If I so much as have a hot chocolate even within two weeks, I end up regretting it and remember what I did once I feel that pain.....just happened last month and my pms was like flu with breast pain added....) All that relief just from changing one thing.
Making huge dietary changes is unrealistic and makes people give up. But maybe one thing every three months? Adding certain foods stopping certain things ....I don't know? Just hoping for one thing to start your spiral up rather than where it's still going.
And yeah, work hard to find one ongoing doctor....be a pita to them over that issue.

 

[InsaneCdn]

Complex cases require continuity of care... and your case is definitely complex!
Yes, do your own scheduling so you can get ONE consistent doctor.

 

[JJJ]

Can you take part of her advice without trying the impossible?

Get up and dressed and go to the local diner and have a cup of coffee. Find a church with a morning womens group or see if the local hospital needs any baby holders. Something that lets you sit the entire time but gets you out and around other people.

 

[hearts and roses]

(((Janet))) What your Dr said to you was not so horrible. It's that she didn't review your file completely before saying it. It is true that a body in motion tends to stay in motion, but with the level of pain you feel everyday all day, it's difficult at best.

Her comment about finding a routine, forcing yourself to get up and shower and begin your day, keeping busy, sounds like what she wants is for you to re-set your clock. Meaning, your natural bio-rthyms are off (I know this because mine tend to do that now and again, usually brought on by chronic pain which causes interrupted sleep) so you have to force yourself to stay awake by day so you can sleep at night. This process usually takes about a week so during that time, you will be very tired...make sure you stay away from artificial foods and stimulants, eat a lot of proteins and drink a lot of water. In fact, I had to keep a diary of everything I ate and drank. This does work and may be rewarding if you're able to net more than two hours of sleep here and there.

In regards to the gastric by-pass procedure, from what I've heard it's become easier to get it. Maybe she realizes that with all your pain and inability to move like you used to, it may be a starting point to lose some of the weight through the gastric bypass. I don't think she sounds horrible - she's maybe looking at you with new eyes?

Hugs.

 

[Hound dog]

I'd only schedule appts to see the doctor you've been seeing all along. Just because he's joined a much larger practice doesn't mean you have to see the other docs. They don't know your involved medical history that goes along with the mental history.

psychiatrist was actually right in what she said. The problem is, due to various medical conditions......she's going to have to get much more creative in her suggestions. A set time to get up and try to stay up is fine. But as far as exercise goes.......to start off you might want to work on range of motion exercises first to help keep your joints moving and your muscles from atrophying and growing weaker. This itself will be tiring for a while until you build up some stamina. Moving is what is important. You don't need to do a marathon to move, you just need to move. Set time goals for eat set of exercises to increase stamina but don't beat yourself up if you have days you just can't reach them.

You might want to make an appointment with your fam doctor and have a blood test to check your liver/kidney function. You are on a lot of different medications and they could be causing prolonged effect.

Hugs