Fibromyalgia, Chronic Fatigue Syndrome & the Post-Christmas Crash

I paced myself well this holiday season, so I’m not really suffering from a pain flareup but I am feeling more tired than usual. It’s difficult to make this confession but I went off my antidepressant medication earlier this year because of side effects, and that turned out to be a big mistake for me. I’ve tried many antidepressants and had problems with them, so just last week I went back on the one that I tolerated better (Sinequan — generic name “doxepin”). So, right now I’m in the middle of a wintertime CFS/fibro depression — you can just imagine. These meds take time to work but I’ve got plenty of patience. After 23 years with fibromyalgia, you learn patience if nothing else. Hopefully, in a few weeks, I’ll be starting to feel better emotionally. I just wish I could feel more normal physically. A miracle cure would be wonderful but I’m realistic and know that even with the new XMRV research, it may take a few more years until we have a new antiviral treatment protocol that will work for us all. It’s something to hope for and that’s what I’ll do. I’ve stuck it out for this long and I won’t give up.

And, I’ll take your advice, Adrienne, and visit the forum more often. I just need to talk to other people who really know what I’m going through. I hope all of you have survived this frenzied time of year. It does have its good and happy times but it can be really tiring for people with CFS/fibromyalgia. Wishing all of you a healthier and happier 2010. Lots of Love!

Keep fighting Nancy A. I think we know you. When we lived in Crystal Lake, the lady next door said you were the only other person beside Kate that had CFIDS.

Hi Adrienne-if what you have done works for you – FANTASTIC! Just to say, for all of us, ANY and ALL holidays, and packing, travelling, ‘entertaining’, shopping, AND EVEN JUST DOING MINDLESS, SO-THOUGHT-’CALMING’ op-outs, are all terribly stressful!! As Nancy said -she had ‘paced herself’ but is still no ‘on top of herself’. The BUILD-UP of sensory integration from the THYMUS gland that is 4cms smaller in EVERY FM FROM BIRTH (EMG STUDIES 2004) confirm that we HAVE to overcompensate under duress, or positve stess! So, with great preperation, knowing the above to be true, Fibies with or with CFS or ADRENAL FATIGUE more likely adding to the Holiday Seasons stressors, or ‘going on HOLIDAY’, 24/7 BREATHING DIAPHRAGMATICALLY, MEDITATION, 3 TIMES A DAY AT LEAST, CALMING EXERCISES EG TAI CHI/YOGA STRETCHES, QUEIT WALKS, QUIET-DOWN-TIME-even if that all means locking the bathrooms door and having that time-will definately improve the OUTCOME OF THIS SEASON. This from one who is 18 yr in remission Fm+ et al, but never forget these lessons, and always am given back the gift of ABILITY rather than DISABILITY -in my opinion, breathing, mediation, positive thought and INTENTION to ’stay well at all times’ with daily prep., 365 days a year 24/7, is the most selfless, non-ego-gifts we can all give ourselves. I wish everyone still suffering an empowering 2010. Much love from South Africa. Sharon Levin. http://www.fibromyalgisa.co.za. fmssha@ibi.co.za

Thanks for the encouragement, Jim! No, I’ve been living here in Long Island, NY most of my life (I was born in Brooklyn), so we don’t know each other. But, just knowing there are people here who understand what I’m going through makes it feel like we’re all family.

Now that the “holiday hype” is almost over, we can start to get back to our daily lives — I wouldn’t say “normal lives” because our lives are anything but normal. But I’ll take it one day at a time — that’s what we should all do. We shouldn’t feel guilt or place unrealistic expectations on ourselves now or at any time of year.

Adrienne, you have the very best site here for CFS/fibro info since it’s updated all the time and you have a forum where people can meet and discuss their issues. You’re the best, and I wish you and all the CFS-fibro friends a Happy New Year!

I thought I had done well, with limited budget and time I found just what I needed to make great gifts for coworkers, packaged them nicely and was done on time. What I didn’t take into account was that this year anything was too much since I am surviving a Holiday breakup of a 20 year relationship, with a humilating betrayal. Aaaarghh what a blow that was and I started crashing 2 days before and kept on pushing to show up and prove to everyone that I was ok and handling it well so they wouldn’t worry. Oops! Big crash, I have been sleeping in between pain pills for the last week! Let it be a lesson to us all that no matter what our minds think they can handle, our bodies will tell the truth every time!

Luckily we have every thing ready early for Christmas. My hubby does all the decorating and gift wrapping. We went to my brothers for Christmas dinner and hubby just had to make his homemade bun to take. I took this week off of dog-sitting so I could just enjoy the week since hubby took this week off too but I ended up sick with a cold. I think I caught it from my 2 year old great-nephew. Now that Christmas is over I just feel wiped out and feel like I could sleep until spring. Happy New Year everyone.

I thought I was taking it easy but apparently I wasn’t. I am in a deep funk right now, flu like symptoms, tired, weak, body aches, sore throat. No, I do not have a cold or the flu. These are my Fibro/CFS symptoms. Thankfully, hubby is watching football, and the dinner is cooking itself in the oven. I am kicked back with a book, an occasional foray to my computer, and a movie on HomeBox or two. I walk around every once in a while to keep my blood circulating. Woe is me. I’m feeling sorry for myself.

I thought I did really well pressys not too lavish within budget as my work is mainly school termed based, a few aches and pains even walked twice for forty minutes chrissy day, but I forgot about the delayed pain, My head is now throbbing nothing will stop it sleep for nearly two days the heat here in Australia has been humid, hot unrelenting, my hands are swollen my back needs lot of stretching and I feel like I have the flu, I had the swine flu injection but it only wakes me at night hot and a little sore, just put aircon in my window in my room a little relief , but then the cold hurts my joints, my daughter is away with her father for the first time in years and thank goodness for face book I know she is doing ok Might go and lie down and try to read a book my headache has not allow that for a while but I am not used to lying around even if I need to thanks for leaving your comments it makes me think yep that is right that happens to us, it is ok and great to talk to others no one who doesnt understand this condition can empathise thanks have a great 2010 Jen

I too thought I had paced myself……but had a bottle of red wine and brought in the New Year!
We had other plans that fell through at the last moment so had a few people at home. I should have known better, but it was fun at the time.
Massive headache and violent gastro then slept all through yesterday and last night. Am out of bed today but am too fragile to do anything and headache is still bad, but I have managed to read your posts and so no longer feel so isolated.
If I have a plan I can be very good at sticking with it.
I should have planned better.

After seeing a local rhumetologist who put me on Oxy and Methadone i decided to detox myself starting Dec1,2009.I beleive opiates create a quenchless cycle of screaming pain.
After 5 days of shakeing,vomiting, diarea, constant crying…I saw a local D.O.. Can you make this a little easier for me? He perscribed Tramadol, anti nausea, lite benzos. Also started micro dose Hydrocorizone. My pain level went from 259 to 20. You take a 2 day holiday weekly from the hydrocorizone so your own adernals are forced to work. In addition I found an herb called Kratom, used in Russia to get heroin addicts calmly off their drug. Kratom is legal in the US and knocks out pain without being an opiod. Amazing stuff. Out of bed and power walKing 20 to 30 minuted daily . Noticing there are birds in the sky and flowers in bloom. Also very chatty now! Dont want to overdue the exercise. Prayer is key in all of this nightmare. New Year and New Life. Don’t become a victom of a pain pill doctor it WILL KILL you. The Helen Foundation provided the micro cordisone treatment.
Willing to help anyone and open to suggestions.
Judy

This message is to Judy, hi Judy, thank you for your information on how you are doing so well these days. How did you come to hear about the herb Kartom? I did some research since reading your comment and am looking to order some to try. My pain is so severe it hurts to breathe. I can only dream of feeling well again, feeling like I did before these s/s 5+ years ago. Could you please give me any/all info. you have regarding the herb. I have located a website that I can order from, seems “real” but any recommendations you can give me I appreciate. thank you in advance, so happy for you that you can actually power walk, I dream to do that again some day, take care, Renee

Hello Everyone….my first post here….yes, Judy if you would be kind enough to post more about the herb Kratom I’d be very grateful. Any suggestions as to a reputable site/store from which to buy? Happy New Year to All, and thanks! Darlene

Hi…yes Judy…any and all info. you could supply re: good web site/store for purchasing the herb would be greatly appreciated. Thanks.

Just a reminder to be careful when experimenting with treatments. I’ve been able to find plenty of claims about kratom, but so far I haven’t been able to find any studies to back them up. (That doesn’t necessarily mean it doesn’t work, just that nothing’s been proven.) Do your own research and make your own decisions, then make sure you’re careful and alert to possible side effects. You should also talk to your doctor and pharmacist before starting — you can try it even if they don’t agree with you, but they might be able to point out possible complications or drug interactions.

I left 3 notes with Kratom info, they were listed and now have disappeared. Maybe by listing a phone number i got booted . OK, I understand. Do this, go to any site you like in search of Captain Kratom. It is the brand that works.

Ther are 3 other LEGAL herbs that erase pain . Go on line, look for pep spice,or magic or indian warrior all LEGAL, can be found on line.
Hope you get walking and living again.

Hi Judy, thank you sooo much for your info. that’s too bad the other posts disappeared. I will look into that brand name and see what I come up with as to where to buy it from. I will make sure it looks like secure site! You don’t know how much this means that something may be out there that can help my pain. thanks again, I’ll let you know how it goes! Take care, Renee

A,
Thank you for the advice you shared. We tend to become a bit impulsive [ya think]. I too do not know the whole story of Kratom, So far I have found that daily use can darken the skin and curb the appitetw[sp].
Thank you A for all you do. Your work does not go by without appreciation firmly attatched

Check out an article in PC World. They bought Kratom and other remedies online and had them tested at the University of Mississippi. They are the real deal, apparently. I ordered some today since it’s legal. Pain relief plus energy? Dream come true

I am feeling a bit blue today… This year I was not into Christmas at first, but got into it a little by little, a little decorating & shopping just for my husband & elderly Mom & the dogs, as we don’t have kids, and Ma lives with us. But then by the time I got into it, it was over! So the house is still messy, and I have no energy, & I gotta clean it up, but probably not today. I struggle with not having enough stamina, and fatigue, and the inevitable muscle pain & soreness when I overdo. Also mild depression at times, but I do not want to go on anti-depressants, tried several, and I do better without them.

It helped that I refused to have a big dinner at home for this Christmas, and realized that I have my limitations, and that it’s ok to not have a ‘Martha Stewart’ style Christmas. I do not like to cook, and have people over, as it is too much stress to clean the house & cook. Did that for Thanksgiving, and I was sore & exhausted for days. I’d rather go out and meet up with friends & family, so yesterday we met up with my husband’s sister & brother-in-law at our favorite
Chinese restaurant for lunch, then to see the Narnia movie, Voyage of the Dawn Treader, and we all enjoyed ourselves.

If my house is not up to the standards I want it to be, I’d rather not have people over.. Maybe it’s a feeling of inadequecy, but it’s part of my personality, and it causes a lot of stress if I am not the ‘hostess with the mostest’…. Luckliy, I have understanding friends & family, and a wonderful husband who understands what l live with.

merry xmas to all of you and hopefully something will happen in 2011…there is a scientist now in philadelphia who has cured 15patients with hiv/aids who were non-anemic. so for anyone saying a retro is for life is a total lie! he used a form of vitamin’d’ binding protein machrophage activating factor and between 14 and 18 weekly injections their cd-4 counts normalized and disease gone. these trials were done in japan and success with cure in breast cancer and other various methods. a doctor kenny demeiler is using on cfs but a question of whether he is using the exact method as original scientist??? he has a bit of a shady past where he loves to take credit for someone else’s work. he also loves to call press conferences and usually just hot air. the original scientist who discovered this method is dr. nobuto yamamoto. downfall to all of this is now pharma industry is rushing to have it synthetic form made and this could means years away from people. it is called GcMAF pronounced (Gc Mauf) if you search online you will all see the published papers and lots of work on this method.he has his patents in place and secured from the leeches who will try to steal his credit… he claims he can cure aids and cancer. in the meantime i will continue on the http://www.watercure.com http://www.watercure2.org god bless all of you and hope your xmas was o.k. considering this living hell…be well….

hydrocortisone even in small doses dramatically reduces pain sioi would be very hesitant on someones claim(s) on any herbs or meds while on a steroid. prednisone/prednisolone small dose 5to15 mg is a miracle med in cfs. once or twice a year i get a day of pain…plus water/celtic salt works wonders and last, a lot of pain in cfs is related to hypotension and not enough blood volume reaching muscles/joints….

I wanted to let you all know that the holiday planner is one of the best tools available for folks like us. it really was a God-send. This Christmas went a lot better than previous Christmases.

I did very little this Christmas. Shopping was gift cards,went to my daughters to eat and lo and be hold I still had a fibro & CFS crash..Not as bad as if I had done my usual but still had one. I think part of it had to do with the rain here in Cali. the week before

Over the last couple of years I’ve had to make some very serious changes. Being moderately afflicted with ME/CFS & Fibro, I continued with the Christmas festivities – it was scaled down but was still more than I should have been doing.

Then my husband got sick. So long story short, I plan it so that Christmas day is ours. We do our celebrating Christmas Eve with family and church friends that evening or before. Then, Christmas Day is ours to sleep as late as we want and do nothing but eat leftovers or whatever.

I can’t decorate like I used to because I was 44 when I got sick in 1984 so that makes me 71 now. With aging on top of being sick, I’m downsizing what I have and what I do. Its very slow going in some respects. But I have to.

So as I decorated the tree and house (which took me 2 weeks to do) I put some items in the box for the charity that does pick-up. I’ll do the same as I put things away. But since it was almost Christmas by the time I had completed decorating and had put the boxes back in the closet, I will celebrate Russian Christmas (which is my heritage) by continuing to light up the tree and lighted nativity outside, and then at some point around the 2nd week of January, I will begin dismantling the tree so that by February it will be done and more items will be in the charity box.

I never know when my husband is going to have a problem with one of his many health issues with the worst being the fact that he’s in remission from lung cancer. So I’m preparing for the worst so that I don’t force my children to do so much for me. My soon helps my husband a lot with things he tries to do but just can’t handle any more.

So my slant on handling the holidays include handling being a kind of a caregiver myself. So I keep things as simple as possible. For example, we were invited to a New Years Eve party tonight and I passed. We’re going to someone’s 70th birthday party Sunday so that’s how I pace.

Happy New Year All!

re: Kratom. The fact that kratom is used to help ease opiate withdrawal infers that it is something intended for short term use, not as long term pain relief. I was recently put on clonazepam on a trial basis to see if it would help my sleep problems (nighttime jerking and severe bruxism). My doctor was very specific about its usage … the amount, the frequency and duration (all very limited), as well as what it can and cannot be taken with (right down to not taking it with grapefruit or its juice). I also must go in and see him at least once a month to report how many times I have used it, the results of that usage and to have my vitals taken. My point in sharing this personal information is cautionary. No matter what we take to help with symptoms, it is not without risk .. be it “pharmaceutical” or “herbal”. Just because something is “legal” it does not mean it is right for everyone or anyone in particular. We must bear in mind that most opiates were initally discovered and taken in their “natural” state and were legal – that is until, over time, their addictive natures and undesirable side effects were discovered. I do not disbelieve Kratom could be helpful, I just feel no one should take anything without consulting their doctor first and being properly monitored. We deserve the best and safest care possible .

Hello. For the past 2 years Christmas came sooner than I was ready for. Last year Thanksgiving week my mother had hip surgery and has been in a nursing home ever since; so that was added stressor with big changes in our routines. So last year our family did our separate things for Thanksgiving and got together for Christmas. We always have Christmas Eve at home with daughter and her family. On Christmas day we have lunch with my family and supper with husband’s family; so it is always a long day for us. I said I was going to shop early this year and of course didn’t. I am learning to take one activity at a time, then begin on the next as soon as I can. I cannot tolerate shopping anymore especially when under pressure of the Christmas deadline, etc. We did survive Christmas Day and actually enjoyed it once all was finally done. We bring my mother home from the nursing home for the day, and since she can’t be up for too long, this shortened our day somewhat. However, the day after Christmas a stomach bug had been passed around apparently, because one after another we fell victim to it. My husband was off this week also. Both of us became sick, which lasted a couple of days, and I wasn’t too sick. In a way it gave me the excuse I needed to play catch up on sleep and rest. Actually I was more lazy that week than the whole year I think. But I came thru it feeling better overall.

So, all that to say I felt better after having a stomach virus and resting a week! We have to keep going so as not to stop altogether.