Please help...bad CFS flare, zero help from anyone!

Discussion in 'Fibromyalgia Main Forum' started by CinCA, Mar 5, 2006.

  1. CinCA

    CinCA New Member

    Please, if I can get any info, I would really appreciate it.

    I am in the middle of a bad CFS flare (severe brain fog, exhausted all the time, aching joints, etc.). I know it's from the stress of moving a month ago (something I was forced to do d/t new job for husband), plus all sorts of other things going on. Problem is I really do not have ANY (and by that I do mean ZERO) friends in my new area, and even where I used to live, not ONE person has even tried to call since we moved. I have NO family that can be of help or I can even tell about CFS, since anytime I say anything about "not feeling well" they say I either am depressed/unstable/mentally ill, anorexic (I am very underweight), it's all in my head, or they just cannot take the stress. Even hubby just brushes me off...he is utterly sick of this and instead moans and groans when the smallest thing isn't perfect with him, then gives me the 3rd degree if I even start the "welcome to my world" sort of thing or don't give him enough sympathy.

    I also have a VERY busy 4 y.o. who won't stop, ever, and who gets me up around 6:30 am every morning (hubby leaves for work by 6 am and gets home now by 7-7:30). I don't have any family who can help, and even though my daughter's in school 5 days a week now, I still can't get over this.

    I don't even have a doctor closeby. The one I've seen for over a year, and who has helped me, is literally 100 miles away. I did the drive down there on Fri. to see my brother-in-law, who's a dentist, for a checkup for me and my daughter. I was so exhausted from the 2 1/2 to 3 hours down (in the rain), and I seriously barely even remember the drive back home, except the horrible road glare as it was later at night (had a bunch of stuff to take care of at our old house). I've posted before asking for any referrals for Ventura County, CA, where we now live (there's zilch on the board's "good doctor" list), with no response. And our insurance is changing anyways...we're temporarily on COBRA for a couple months during the new job's 90-day waiting period (60 days to go), so we are really trying to avoid seeing anyone. Don't have anywhere to go, anyways, and my "old" doctor is doing all he can with no avail. He keeps telling me I have GOT to cut my stress, but my stress is in large part things I cannot change, so it's very tough.

    I've outsourced more than I ever thought I could (longer school days, housekeeper; place we rent has a gardener), and I feel horrible about every penny (despite it all being cheap or being paid for by landlord), as I am not even working. But seriously, it's all I can do to stay on top of laundry and keep the dishes clean.

    I'm so exhausted, but I can't fall asleep at night...just sit empty-eyed staring at the walls, literally sometimes, 'til 11 or 12. When I do sleep, it's interrupted, but I've tried scores of sleep meds in the past, and I have reacted negatively to all, even natural stuff like valerian, which makes me extremely wired. I seem to have an opposite effect or get severe side effects to pretty much any medication, which is why I turned to my naturopathic physician. He has me taking extra magnesium, which helps somewhat, but I think I have too much going on.

    Please, this board SERIOUSLY is my ONLY source of any support whatsoever. I don't even have a neighbor to watch our cat when we go with hubby on a business trip in a couple of weeks...really...they go right in and close their garage doors when they get home from work...never see anyone. Hubby goes away again this week for business, and while my mom is coming in to visit, she has a nervous disorder, it's coming up on the 9th anniversary since my dad basically died in front of her of a heart attack, and she really cannot take me being sick or saying anything to her. Really. Believe me, I've been on my own since a VERY young age when it's come to dealing with problems. But at least my mom can hopefully run a little interference with my daughter at night, or maybe early in the morning so I can get an extra hour of sleep.

    If anyone has any ideas for help, or ideally if anyone lives near me in Ventura Co. or even NW L.A. Co. and knows a good doctor, please do let me know! I am trying to do the best I can, but my body is just not holding up.

    Thanks so very much!
    C.
  2. Chootik

    Chootik New Member

    I was thinking you could go to the "Hormone and Longitivity Center" they are in Torrance, CA. Maybe that's a bit far for you, but they know a lot about this stuff. They are rather expensive and sometimes too busy and not responsive, but they are the ones who know the most about this. Def. more than any conventional Dr. in town! They will run a whole lot of test and then suggest a lot of supplements for you to get you back on your feet.

    Also if you have time, read the posts in on this site. They are very helpfull and hopefully you will find the answeres you are looking for here.

    I wish you the best and good luck with fighting this.

  3. alaska3355

    alaska3355 New Member

    to hire a babysitter for some short breaks while your hubby is gone. You'll need time for yourself, and that might make things more bearable. Hang in there...we're here for you! Terri
  4. alaska3355

    alaska3355 New Member

    melatonin? It's supposed to be a natural sleep aid...might be worth a try.
  5. Hope4Sofia

    Hope4Sofia New Member

    Ventura county are you? I grew up there and just moved away from there 3 yrs ago. My parents still live there - maybe I can help.

    Sofi
  6. CinCA

    CinCA New Member

    For the information everyone's given me so far. Fibrotart...I am so, so sorry to hear about all you've been going through! I so wish I lived close to you to give you a nice, big hug! If you ever want to chat or something, drop me a post, and I'll see if we can. For now, big ((((((HUGS))))))) to you!

    As for the melatonin, tried it without success. As I said, nothing seems to crack the sleep problems. My dr. thinks it's due to my liver being so out of whack with the loads of toxins in my body, and I will say it does seem to be better when I am able to get through a little bit of mild detox. I was making progress, but I know I've taken steps backwards with all the moving stress. Still keep trying, though!

    Sofi, I am in central Ventura, I believe, close to T.O., Oxnard, and Ventura. I'd be willing to drive up to an hour away if need be but ideally would like something closer to home. Thanks for any info you could give, and it's funny that you are now where I used to live (and so miss!) in AZ!

    Again, thanks so much, and I do hope and pray I can get over this. I'm exhausted and it's only 7 pm, so I hope I can get a good night's sleep.

    C.
  7. spiritsky

    spiritsky Member

    You're pretty close to the FFC in Torrence. Just a couple of hours drive. I go there to see Dr Whiteman. Kent Holthorf, the founer of the FFC clinics also works there. I also have CFS and have been doing much better since going. I'm feeling better, sleeping better and am back at work part time.

    As for sleep, I know you've probably tried it all, but in case you havene't, what works for me is Tryptophan and GABA, but the key thing is you have to take it 2 hours before going to bed. If you take them at bed time you'll just be staring at the cieling again for a couple of hours. Right now I'm taking 1250mg Typtophan and 500mg GABA. Also, if I'm still having trouble falling asleep then I take an additional 200mg of Theanine. So far this has been keeping me off the Ambiens and I'm sleeping much better.

  8. CinCA

    CinCA New Member

    Yes, I have found out there is the FFC in Torrance. With traffic, it's not the easiest drive, but it's not all that bad all things considered.

    I do have serious reservations about going somewhere like the FFC, though. Please, any readers do understand this is my personal opinion/experience and take it with a grain of salt. I went to a practitioner that used a similar diagnosis/tx. regimen as to what I have read about the FFC (lots of tests, lots of supplements, etc.). While I did get at least some concrete answers (she was the dr. who dx'd my CFS) and was able to get over a few things, like heavy metal toxicity, this was done at great expense, and I also had some very bad detox reactions, where I definitely got MUCH sicker initially and had to spend hundreds of dollars on treatments to try to get over that hump.

    We've spent so much out of pocket for me and my daughter that I am very gun-shy about spending huge quantities again. The healthcare business has gotten to where I question everything, and a lot of these places sadly to me seem like supplement mills where the doctors can get a whole lot of kickbacks on dispensing these, ordering all these non-covered tests, etc. It's so hard to trust anyone, esp. out in this neck of the woods, where everyone seems to just want to make a quick buck. I hope you can understand this comes from a lot of experience and having friends in the field, so I sadly know how it all works these days.

    Despite hubby getting a very good job, we are paying rent plus mortgage, and the market is stagnant re: selling our old home, so we don't see it selling anytime soon. We also need to save as much as we can to buy up here...prices are terrible, esp. as we are very limited in where we are willing to live for various reasons (and that will not change). So I can't go on a spending binge, and I am so worn out I just can't handle the barrages of needles, IVs, poking, prodding, and thousand-dollar medical bills at this point. If that's what I would expect at the FFC (esp. if it's one of those ALL out-of-pocket places), I just don't see it working at all with our financial situation.

    That being said, I would like to hear from someone who has been there. Would you be willing to discuss your experience more? I'd really appreciate it.

    Thanks again for the info. I so appreciate your reply.
    C.