it's a cliche...but a cliche is a cliche b/c it's true. acceptance helped me. there are still times that i get really mad about my illness and limits. i have found that it's a waste of the limited energy i have to fight my body, to fight myself. let go of guilt and anger...these are stress and this illness can NOT handle stress b/c it wipes us out. listen to your body, even watching an intense tv show or movie (like a documentary or v for vendetta lol) can exhaust me so i watch in pieces. and sleep when you can (if you work) or when you need to. also find pride in yourself...even if it's a small step forward, it's still forward.
also joining the chat...finding others who are where you are, helping newbies, talking to old-timers (those who have had the disease a long time) this helps SO much
I can totally relate to everything yogastye said on 9/11/08. I just had a followup with my GP yesterday and she continues to encourage me to eat foods that I know bother me. But that's just the thing -- they bother ME. Among the items that do are many of the same on yogastyle's list: tomatoes, garlic, onion, pepper (of any kind), and the jury is still out on wheat and dairy although it's very apparent to me that the fewer carbs I consume, the better I feel. In general I follow an Atkins-like diet which, as an added bonus, keeps my weight down (and stable) and helps me avoid the usual spike & drops in blood sugar that result from eating processed carbs.
Despite some progress with diet "discoveries", I still have not found the magic combo of diet, meds, supplements, etc. that work for me. I just started Lyrica last night at the advice of my GP and I don't have a good feeling about it (dizziness, fogginess and what I'll call "spaghetti legs" have bothered me all day), but I'm going to try it for a week then make a decision (with my GP, of course) about whether or not to continue.
I take a TON of vitamins and supplement (vitamin/mineral/herbal combos) designed to increase energy and alertness/focus. I think some of them really help but again, I still haven't found the magic combo to make me feel normal. Perhaps this is my new normal, but I'm not ready to submit to that conclusion yet.
Pretties, I have asked my doctor about my thyroid and his reply was that it was normal. Now I don't know if that is a normal as a whole, because what could be normal for you may not be normal for me. What do you think? Help me!
[This Message was Edited on 01/21/2009]
I have had FM for about 20 years. I have improved mostly by learning the appropriate exercises for my body (keep moving gently) and when to do them (listening to my body, self-care routines, and through a strong spiritual program that has helped me with acceptance of my condition and to get out of "self." I have been through the whole spectrum of denial, pain, guilt, self-pity, envy, feeling misunderstood because I look okay from the outside, anger at self and others, grief over lost opportunities and dreams, despair and loss of hope and generally fighting it. I have improved substantially by learning Tai Chi. I signed up for Tai Chi classes three years ago. I go to classes once a week and practice at home 4 or 5 times a week. My teacher was trained in yang style Tai Chi and has been practicing it for over 12 years. His instruction is authentic and thorough. This was important. I started with QiGong internal meditation and then progressing at my own pace to 24-movement Tai Chi. Tai Chi is very gentle and you can go at your own pace and comfort. It helps with not "fighting it." Tai Chi has lessened my FM pain and fatigue. It has helped me be more flexible and strong; have a better sense of balance; better mood; improved self-confidence; moving my body efficiently; calmer nervous system; more relaxed; and I have made new friends who practice Tai Chi. I have improved so much that I don't have to see my Rheumatologist any more! And now I am learning the 108-movement Tai Chi! This is no small feat for me. It has taken lots of practice and listening to my body as to when and where and how often I do it--and accepting that my body is different from 'normies" bodies. I practiced almost daily to get into the habit of doing Tai Chi, even if it meant only 10 minutes of practice in one day. I also walk regularly, mostly outdoors. I am dedicated and committed to my self-cultivation and improvement.
I stick with my self-care routines as best as I can, which means a regular sleep schedule, twice monthly massages, daily short naps--even when I am feeling no pain or fatigue. The quality of my activities is more important than quantity--I don't care if I can run a marathon or be on several boards--if I can spend time with my 16-month old granddaughter and not be so fatigued and in pain, that is a blessing. And not taking on too much--old or new. Simplicity. Gratitude. Humility. These are my internal logos. Simplicity is taking it one day at time and not taking on too much. Gratitude is being thankful for what I can do and what is in front of me instead of wanting it different (acceptance) or wanting what I can't have. I focus on what I can do. Humility is accepting that I am human and the feelings I go through with FM are normal and that I am not the only human being with a devasting illness or living with misfortune-others in this world suffer from disaster, paralysis, cancer, drug addiction, lost limbs, poverty, starvation, and they cope. In Alaska, there is a 360 mile-wheelchair race every summer! I also pray and meditate every day and write my feelings and thoughts in a journal. I read inspirational books and stories.
<br><br>[<i>This Message was Edited on 01/21/2009</i>]
[This Message was Edited on 01/21/2009]
I am responding to your message on the ProHealth Board of 10/25/06 which discusses your experience with Dr. Dan Heffez and your subsequent surgery. Are you still experiencing good results from this surgery? I am a FM suffer for over 20 years and have considerable pain, especially in my neck and shoulders,also throughout body.
You indicated in your post that you would help with info and perhaps info on your good doctor Heffez, his address/phone or email address.
We upped my Time released T3 to 110 mgs. I have not been sick for 3 weeks total and can actually think. Oh, I also started CoQ10 and grapeseed extract at the same time. The grapeseed extract is simply because of the recient reports of leukemia cells being killed off by this compound. My mother died of leukemia so it seems like a reasonable move. But yeah, it is really nice to have energy and actually feel emotionally happy...especially in the morning. Now, it may be due to many of the other things I am doing as well, but at least these particular changes are making a difference for now.
The very best thing I did was continue to look for the CAUSE of my symptoms instead of accepting the diagnosis and treating symptomatically.
I thought all my symptoms were from a viral cause but I recently found out that a bacterial cause is the problem.
I was Dx with FM 21 yrs ago. Because of other people's posts on this board, I decided to research lyme disease as a cause of all my FM symptoms.
I got an Igenex western blot and compared the results, band by band, to Dr Burrascano's 2008 guidelines. I did not take the "negative" interpretation reported on the lab results as gospel.
I knew the results were significant.
I am now being tested for other coinfections such as babesia, bartonella and ehrlichia. I have started treatment with 3 antibiotics. I am herxing which means the bacteria are starting to die.
My lyme Dr said I have FM and CFS symptoms which were caused by the bacteria Borrelia burgdorferi. I now have great hope of getting better.
I have FM with insomnia. I previously tried remeron which was somewhat helpful for sleep but it caused constipation so had to stop taking it. Do/did you experience the same side effect and if so, what did you do for it? Thank you!
Hi...I have FM and have great difficulty with quantity and quality of sleep coupled with anxious/stressful dreams. Did you have a problem with sleep before you started on inositol, gaba and melatonin? Also, are you still taking these supplements and are they still working for you. This is what I read on your post dated March 13, 2008. Thank you!
hello my name is sofyy. i have fm for 7 years now, and really worked for me is listening to soft realxing music in a quite place of the house, or in spring time go to the park by myself take a short-or long walk depends how my body feels that day, because i always believed that i have to fight with the pain, not let the pay fight me, and also i like to visit the site and read so great information that the team of this such special pro-health offer us to read. is so much to read and is so much to learn and so much to keep in our hearts because they give us this great and beautiful opportunity to listen to them and also the opportunity to open our hearts and let other listen to us. i thanks god each day of my life because we are lucky to have PRO_HEALTH team.
have a great day everyone even the pain is hurting so much today. love sofyy.
I have had CFS and FMS for seven years now. I went to Uchee Pines Lifestyle Center in Feb/Mar of '09, and their treatments have helped me tremendously:
-- Adhering to the "eight laws of health", which are:
Nutrition (I have adopted the vegan diet, with lots of fresh fruits, veggies, ground flax seed for Omega's, chia seeds, green drink)
Exercise (when I can),
Water (plenty of fresh H2O),
Sunshine (for Vit. D; 15 - 30 min. daily - no burning),
Temperance in all things,
Fresh Air (deep breathing exercises several times daily),
Trust in God
--Hydrotherapy (VERY IMPORTANT! Greatly reduces pain for hours)
Also, when I went to the lifestyle center, I was on eight different meds. I went in using a walker or a cane. I was VERY SICK; to the point of death. The center gradually took me off the two pain meds, then worked on getting me off the other anti-seizure meds, anti-depressants, etc. Then after the withdrawel symptoms were done, I started feeling some better each day! I was able to walk by myself out of the center!!! I was praising the Lord.
I've been home now for two months, and have tried to stick to the center's plan as closely as possible, modifying the treatments so that I could do them at home. I still have crashes/flares, but they are shorter in duration. Before, the slightest thing would cause a major crash/flare, and I would be bedridden for weeks. Now, I still have pretty severe crashes, but like I mentioned, they are shorter, around three days or so. My level of functioning is still not back to pre-illness levels, but hopefully, as I follow this plan, I may be able to live again. I pray so.
when you're not feeling well even brushing your teeth can like a momentous task. I started using electric toothbrushes so that they could do all of the work and finally found one that I really like-it's made by oral-b ("crossaction powermax whitening") and is rechargeable-it only costs around $13.