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02/11/2012 01:29 PM

Can anyone else here relate? Thank u 4 being u!

Beci41487
 
Posts: 34
Member

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!

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02/14/2012 08:02 PM
hedap
 
Posts: 2012
Senior Member

Hi Beci,

Glad you're back again! To answer some of your questions, yes the fatigue is a major factor in my day. I almost always have a sense of overwhelming fatigue. Then there are what I label as flares where I'll sleep for a couple of days straight. I've never felt the pain was the cause of my fatigue, but a seperate issue. For me the cold and humidity can intensify my symptoms. I force myself as much as possible to keep on a hygiene schedule, but I have to say many times if I'm not going out, I will skip my shower. Some energy choices are not easy! lol. I have always valued my private time and since fibro and fatigue, I battle even more with that balance between socializing and hoarding my energy for my interests.

I'm not on Cymbala anymore, but I think I started around 60mg and then increased the dosage.

It's so wonderful you have your son. I have two grown children and I know there were many times when I relied on their help when I had an energy meltdown especially. Your boyfriend also seems very caring. To relocate for health conditions is not an easy thing to do.

You have a lot of health issues that I haven't experienced. I think considering all that you live with and have been through, that you are functioning well.

I am so glad that you've written in. No, you are not weird or alone, I think you and I are a lot alike. There are plenty of days, if I didn't have something to look forward to and also have such a supportive spouse, I don't know what I'd do....probably sleep my life away completely!

hugs heather


02/14/2012 09:04 PM
Beci41487
 
Posts: 34
Member

Thank you so much, Heather! Hugs to you! I am so glad you are here! God Bless, and we have to pm more, when time and energy allow!

02/23/2012 05:16 PM
hedap
 
Posts: 2012
Senior Member

Beci,

Hope everythings allright. Haven't seen you posting and just wanted to check in. Let me know how things are going when you have time.

hugs, heather

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