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02/11/2012 01:26 PM

Does anyone have the same issues? Thank you!

Posts: 34

My fibro-cfs friends! Sorry I haven't been on in awhile, but do any of you mind helping me with some questions I have? After a year of being rx fibro-cfs, and fighting yet another sinus infection (oh yeah, see below about the sinusitis and 8 surgeries on my ENT's), I am wondering what you all deal with. Lately, getting up out of bed,making my bed, eating,taking my meds and then laying back down (with exception to the couple of hours I have to do my beading jewelry everyday,except when I am "crashed"Wink. I am just looking for people who have some commonalities, so I don't feel like such a freak, lately?

1) does winter hurt you ALOT and zap you of all energy?

2) how long does it take for you to get used to a new drug, I just went up to 120mg from 60mg of cymbalta? My mood is better at 60mg, but I asked doc for 120mg, which is recommended fibro dose?

3) are there times when you go a week or more with no shower? ( I live in an Rv, so I don't have a bath, but i do take "bed baths" every day, it's just the shower hurts me and takes ALOT of energy I don't have?

4) is being unsociable normal? It just takes too much energy, people don't understand me anymore, I mean, I get out about twice a month now that it's winter, where in the summer I got out at least once a week. I live with my 18 yr old son, who helps ALOT, and in August, my fiancé is going to come get me and my trailer and we are then going to FL to "winter it out" because my body can't take the cold, but, it's like, I am just ok, watching tv and being on the Internet, without a whole lot of people?

5) do you have "crashes" where, after only being able to sleep 4-5 hours in a row, you sleep for like, 12-24 hrs in a row? My doc says its my bodies way of dealing with the pain,but it really sucks,cause I never know when I will crash, so I can't ever make any plans.

I know these are ALOT of ??s, and after a year now of being rx fibro, cfs, and before that i was autoimmune defiencient, crohns, sinus degeneration, throat surgery, ear and nose surgeries, CNT damage from sinusitis, nerve damage, blah, blah oh yeah, and MENEIRS disease, I am kinda getting used to this lifestyle, basically, I am handicapped and there is nothing I can do about it,but I am learning to live with it... I am just reaching out to see what is "normal"(although I know there is no normal for us!), maybe just perhaps, some common ground?

Any input from y'all would be so helpful?!? I don't get on here ALOT, in fact, I don't do very many social blogs anymore, and I suppose I need to get back into "my support group", which is you guys, because this site totally rocks and I am so grateful you are all here. I am honored to be among you, as I find your courage, hope and humor essential to my recovery!


02/12/2012 06:00 AM
Posts: 448


I also do the crashing thing....example....this last Tuesday was draining, I went to bed at 4pm and woke up at 1pm weds, was awake for 2 hours then back to bed, slept till noon thurs, then I started my no sleep cycle, I didn't sleep again till 4pm on friday....

This is so doc just said I need to see someone else cuz she doesn't know what to do for me.

I'll try to answer some of your questions....

Yes winter is bad for me I have SAD so yeah...add them all up and I'm a zombie....

It takes me longer than the average to adjust to a drug

Yep....I live alone and unless I go out I wouldn't see anyone for weeks...I don't have the energy to shower, and I often wear the same clothes for a week....I don't know why....I guess I don't see the point and it cuts down on laundry....

I have friends but they haven't come to see me in months....I know a few of them think I should just snap out of it....but I can't shake this depression....its been bad like this for a year and I know being constantly depressed can actually affect/damage/change your brain and I wonder what it is doing to me.

I already addressed that I have those weird sleep cycles as well....

I don't have a cfs diagnoses, I don't know why, I certainly fit the description....also, I don't have any income cuz I can't work and that takes a toll as well....I applied for ssi and they've denied me twice and now I have to do the hearing thing....

Anyhoot...hope this helps you to know your not crazy and your not alone....

Gentle hugs....

02/12/2012 07:23 PM
Posts: 34

Moiaddy, thank you and I will pray for you! I got ssd first time through, but then my doc was real helpful. I was so depressed at that time, I was suicidal, and would be often on the way to the "flight deck" bevause I didn't trust myself to not off myself. I am so glad I'm not alone, and neither are you! Perhaps a check in to "camp Thorazine" may get the ssd people to see how very awful this disease is, and that, darn it, you need help! Like I said, pm me anytime and I will be praying the ssd angels for your intercession. It isn't bad enuf that we feel like crap, but to not even be able to afford insurance, DESPITE my ssd payments, (and I won't be eligible for Medicare for another year!) and broke, it just doesn't seem fair. We must have to be the strongest people in the world to live like this!

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