Fibromyalgia Remission & Lingering Symptoms

I have been having daily fibro flares. Well, the last few days have been berthed. Hoping it us the change in seasons. I definitely ALWAYS have these lingering symptoms! All if them ! I can’t re-read this to edit for spelling errors because I am in my phone. Ugh

I have been in remission for about 6mos. I have stopped taking Lyrica and Savella and didn’t notice a return Of symptomsymptoms. I have the weather sensitivity and the morning stiffness and mild fibro fog. I wad pretty much non functioning 4 years ago. The main thing I can attribute to feeling better is eating a natural diet

my fibro/ cfs has not remitted yet although in four years i have gone from 99.98% incapacitated to about 88% incapacitated. i am somewhat thankful for the 12% function.
i think it is still gradually improving although a lot of that improvement is pacing skills and continual choreography of every millivolt of energy per every moment.
anyway – to say i am 12% recovered, i believe i was doing easily twice as much as would be actually healthy – twice the work, twice the stress, half the sleep, over a number of years. anyway that means 200%, conservatively. so in a way, my recovery is 24%, given that i should have been doing half as much as i was. all that to say, i think most of us were/ are already doing far more than we should – so we shouldn’t aspire to 100% on the old scale. not saying we should settle for less in terms of feeling good, but regarding ‘doing’ things, more is not necessarily better – less is probably healthier – the old “100%” was probably a very unhealthy 200%.

Alana, I’m sorry to have to say this, but. that gave me brain ache just reading your comment!! lol

I have had fm for 10 years and have not had a remission in that time but have the occasional really good day and like most women with fm/cfs on a good day, I overdo it and there we go, down and out for a couple of days or it I really go mad a couple of weeks.

Keep up the good work Adrienne.xx

Hi Arlana your post certainly gave me ‘food thought’ – coupled with a comment that a friend of mine made yesterday. We had coffee togather and when I went to move I felt very stiif and ahad a moan – she reminded me that I had been moving furniture and ‘what did I expect’. I hadnt actually moved much – for me – and so didnt expect to feel ‘achy’ – it brought home to me that my expextations of myself and what I can do/need to do can still be way above others – and not necessarily in a healthy way.
I am still ambitious, I do still aspire to do more – and that in many ways there nothing wrong in that – it has helpd to get me back on my feet but – and its a big ‘but’ – in order to keep this improvement I need to be realistic in my thinking and not go back to pushing a if there was no tomorrow.
There still needs to be a continuous reality check of what is helpful and realisitic for me to do on a daily basis keeping in mind all factors and avoiding a boom and bust mentality which probably contributed to getting me into the state I was in last year. Relaxing,taking time out, saying no does not have to be classed as ‘being lazy’ – but rather as looking after myself and improving my health. The word ‘lazy’ is not helpful but merely acts as a ‘driver’ to get me to drive over the cliff edge – again – so is best left out of my vocabulary. Smelling the roses along the way is good for all my senses!

I’ve had fm for over 10 years and I HAVE A GOOD DAY HERE AND THERE, but nothing I would call remission. took a day trip over weekend, woke up this morning, felt like i had been run over by a mack truck.

I’ve had fm for over 10 years and I HAVE A GOOD DAY HERE AND THERE, but nothing I would call remission. took a day trip over weekend, woke up this morning, felt like i had been run over by a mack truck.

I can get a copy for I can send to my Nero?
Good report it is so connected.

Really looking forward to seeing your treatment regimen!

I am very happy to say that after 19 years of chronic fatigue/fibromyalgia (just being diagnosed several years ago) I have started on Nutritional Supplements along with mild exercise and I eat a low glycemic diet. I have had incredible results. Of course I still have to watch what I do but I am happy to say that I have more good days than bad days. If I do over do it (as most of us do with CF/Fibro) when we have good days the recovery time is usually limited to 2 to 3 days depending on the severity of how bad I over did things and the symptoms are very minimal. I can still function! I actually can say I have my life back. If you are suffering from CF/Fibro watch my nutrition seminar at the link above. I would recommend this to everyone with CF/Fibro. It’s because of the great results I have had that I joined this group so I can spread the word and help as many of us as I can.

God Bless,

Jackie, maybe it is my brainfog, but I can’t find your nutrition seminar link above. Will you pls. write what it is that you are taking, for supplements & can you suggest a good bk. about a low glycemic diet? Anything else will be appreciated too. 55 yrs. of this is getting really old, with progression yrly. & will try anything. Thank you!

Dale, I read a blog about a low glycemic diet helping fibro, so I did a bit of research on the internet, a book being a bit much for me, lol. I cut out bread and white sugar, added a banana and a cup of applesauce every day. HUGE difference! Pain cut in half. Eat as much unprocessed food as you can. I take a good multi, CO Q10, 5000 IU of Vit D, 500 IU of vit C, a good B complex and liquid B12. Hope this helps. Positive attitude and positive focus cannot be over emphasized!

Dale, just click on Jackie’s name and you will go to her webpage. HTH

Most my pain symptoms have improved. However, the brain fog creeps up on me option especially when I have not slept well. Headaches too due to the lack of sleep. Sometimes, when I overdo things I get extremely fatigued. Temperature sensitivity or sweating if I am not feeling extremely cold are symptoms I still have. Otherwise, my treatment plan and lifestyle and diet changes have helped me.

If I live a very careful, regimented life, my fibromyalgia is controlled most of the time. I just returned from a long trip to Israel, and I made sure that I broke up my trip so I could sleep at night. A few years ago I was worried about flying to Boston, but since using Xyrem for sleep, I am much more able.

I do exercise 5 days of the week, yoga, pilates, feldenkrais, weight machines, treadmill and bike. Without exercise I get stiff and pained all over again. I take my meds correctly and since using Lyrica and Amitiza am doing much better. I stopped the morphine which I didn’t take to at all and am back on oxycodone.

I still see my therapist to keep negativity at bay, and am healing from the loss of my older son. It’s been an awful hard and sorrowful journey, but even grief must be held within limits. This illness requires full attention, pacing of activity and support from those around us. Fortunately my husband is very supportive, carried my vpap machine on the whole trip! Here’s to research finding out the cause and then the cure of this miserable illness.

Have any of you heard of people with FMS getting petechial hemorrhaging? I’m having a huge flare and one forearm. This is the second time it has happened in two months. My doctor is doing blood work, but I thought you might have a suggestion. Thank you so much.

Hi ZHI
Are you shure you do not have a virus, like dengue fever.
Behind you?
I hope you recover quicly I know how painfull petechie can be.
Try with cold pack it did help me at the time. I truly belive that dengue fever was the start of my chronic fatigue and years later fibro. Now, of cymbalta with vitamin and lipoic acid,omega 3, feverfew, 5 htp and gluten free. I am on my journey to recovery, some days are better some are more painfull especialy when I forget to take my suplements 4 hours thyroid (armor) . Best tip dont trust any one but your own gut.
Good luck.

Joelle, Thank you so much for your answer. I’m truly at a loss. I’ve had FMS for about 20 years – it took several years to find out what it was. I haven’t recently had dengue fever – but it’s possible that many years ago I might have – do you think that could affect me now. This has me pretty down – the doctor has taken blood for a more extensive round of tests. Thanks again.

I also believe my FMS started after having hemorrhagic dengue. You are the first person I’ve heard saying this. I wonder if someone else feels the same???

Joelle, I, too, had dengue fever several years ago and also have wondered if that was the start of my fibro!!! It is so good to know someone else has experienced the same thing. Dengue fever is not that common and I didn’t know who to talk to about it. I am also on several supplements and am gluten/wheat free. What a difference!!! I would have to say I am in remission. Again, thank you for sharing that!!

Hi Zhi,

I have had petechial hemorrhaging and it was due to sun overexposure – it didn’t take very much either, just 10 minutes!

I AM NOT KNOCKING YOUR CLAIMS OF REMISSION BUT A REMISSION IS NO SYMPTOMS OF ILLNESS WHATSOEVER…

Hello! I, like others, have with fibro, have learned how to live a pretty full life. With the help of many different approaches to healing, I can work an 8 hour day, make a meal, and maybe do a little light housekeeping. Not bad! My pain levels are usually around a 4-5. The only times I flare up are when I don’t get enough sleep for a stretch of about a week, or when my thyroid goes AWOL. Positive attitude and the love of those around you is key. I do not expect to ever be symptom free, unless they find a cure. Fibro can make my life difficult, but it can’t kill me. Be well.

Actually Aidan, per the dictionary, remission is defined as a diminution of the seriousness or intensity of disease or pain; a temporary recovery.

According to Dr. Bell, ME/CFS patients may go into remission, but are unlikely to ever be 100% again. Recovery of function ranges from 10% to 85%.

How extensive the remission is may depend on whether a patient has ME/CFS and fibromyalgia. Dr. Natelson’s research shows that patients who have both diseases are far sicker than patients with one or the other.

Other factors may be how well the patient deals with stress (physical and mental stress exacerbates many diseases); and how well the patient has been able to implement pacing and stay within their energy envelope.

Very helpful comment! Thank you for sharing it.

I GUESS HE KNOWS BEST, HE MUST BE ABOUT 70% BETTER…U KNOW WHAT REALLY BLOWS MY MIND ON THIS ILLNESS, DOCTORS WHO BECOME WORLD RENOWNED RESEARCHERS AND HIDE BEHIND THEIR ILLNESS AND BECOME KNOW IT ALLS BUT CANNOT BARELY GET OUT OF BED THEMSELVES….

I’m not sure I would classify where I am at with fibro as being in remission but it is better compared to 10 years ago. I’ve managed this through pacing mostly. As time has gone by, I have more periods when I can accomplish something occasionally. I still only get a couple of hours in before I need to rest for an hour or two. I sleep better thanks to a combination of CPAP and various things to aid sleep. When I don’t sleep I am a mess.
I have focused on trying to decrease the number of migraine attacks with some small success so far. Using feverfew, calcium and magnesium, a TENS unit on my neck and neck exercises I have decreased attacks from weekly to every 2 weeks or so.
I still have what for lack of a better term are hot flashes. They are not the same as menopausal hot flashes. In those I would feel a flush all over and then break out into a panting sweat. What I have now are flashes of burning, usually in extremities but only minimal sweating. This seems more neurologic to me than hormonal.
I also have problens with blood pressure dropping when I stand up. This has gotten worse since I lost 67 lbs. When my weight is down, I run a systolic BP below 100 and standing up from sitting causes me to grab onto a wall or something to hang on until the dizziness passes.
So, not remission but better than before when I barely got out of bed.
I’ve started Yoga to gently get some tone and strength back into my muscles. This has helped my chronic low back pain.
I know I’ll never be able to handle a full 8 hour day on the go. However, being able to do 2-3 hours is such a vast improvement that I am thankful.

After a horrible flare last spring, I’m so happy to be able to report that I think I’m in a remission now. Perhaps we each will have our own definition of remission– for me, I’m working 5-6 hour days, keeping up adequately well with my teenagers & husband, and getting the dishes done every few days. I’m also able to wear most of my clothes again without having intense irritation/pain. I’d say that I’m at about 70% of where I was before the fms/cfs got so bad. I’m beginning to trust my body again. For me, this is so much better than I imagined I’d ever be again. There is hope, and I’m happy to call it remission. We’ve got to celebrate the breaks we get, eh?

(((Thank you, Adrienne.))))

I’m usually pretty good at managing my fibromyalgia and even after major surgery I might not have a flare. The one thing that without fail will trigger a fibrofog (a bad one!) is cold wet weather. Rapid onset severe stressful situations can be tricky for me too (like loosing my last career job because I couldn’t come back to work full time fast enough after thoracic diskectomy and fusion).

HOWEVER (and that’s a big “however”), I keep getting all these other ailments and all to often these various ailments seem to sort of feed off each other. My spine is a biggy there. I’m on my 3rd stenosis in 3 years and every time I get a new health issue on top of it (FM with the thoracic, CU Index autoimmune reaction treated like allergy, and now I’m having a new spinal problem again already and who knows what they’ll find when they disentangle all my symptoms according to their various causes.

So for me, the thing is that these other health crises interfere in my efforts to conquer my FM. Currently, for example, I can’t walk much or my feet hurt (pins and needles, like the diabetic neuropathic pain), which makes it hard to exercise like I should for my fibromyalgia. And not only do my feet hurt, but I’m so unsteady now that I walk with a walker to go anywhere, including out to get the mail.

Adrienne

It is terrible while we are in pain and suffering to be told you are in remission and give us no clue.

Adrienne

It is terrible while we are in pain and suffering to be told you are in remission and give us no clue.

Susie, Aiden and other detractors – be happy for Adrienne – if one of us is in remission, then it’s that much less pain in the word – share the relief and joy of that person and who knows, maybe the positivity will rub off on you. Don’t take away someone else’s achievement because it just brings you further down. Goodness knows we have enough detractors without turning on each other. I know that when you’re low yourself, it’s easier to be negative than positive, but try! I battle each and every day with mind-blowing pain and yet strive to be positive – it’s what keeps me going – I vowed that this illness would not get the better of me and I won’t give in. Mind over matter!

Good on you, Adrienne!

Adrienne,

I too am lucky to be in a state of remission – I’ve recovered about 75% I think. I still have low-level fog all the time and it kicks up whenever I’m in a stressful situation (which means most of the time when I’m at work answering the phones!). I still don’t get restorative sleep and do have patches of allodynia that move around my body. I do still have light and heat sensitivity but not as bad.

I’ve been lucky to control most of my symptoms with acupuncture, diet and exercise – but it’s been a LONG haul.

The last couple of years have been torture. But, slowly I’ve been finding what works for me…..supplements, chiropractic adjustments, exercise (yoga and light weights, swimming, walking, riding the tandem bike with my husband) and a gluten/wheat free diet. One of my greatest discoveries was the book by Dr. Pellegrino, Fibro Up Close and Personal. It answered sooo many of my questions. Before discovering his book, I was blowing up like a balloon and couldn’t figure out why. Now, understanding how carbs are metabolized in our Fibro patients) bodies, I have changed everything about the way I eat and what I eat and have dropped the water weight gain as well as the weight that was creeping up steadily.
The lingering symptoms, which do get worse if I don’t get enough sleep are: brain fog, dropping things, off balance, noise sensitivity and exhaustion.
I listen to my body more than I ever have before and I am so happy with the improvement! I can actually clean for more than an hour and am back out with my horse, training him and riding him…all in the same day! No way could I have done that last summer. Woo Hoo! Never give up. There is always hope. God never gives you more than you can handle.
Keep reading Adrienne’s articles and get that book!

I think it may not be a true remission so much as the longer u live with fm and cf the more of a tightrope you need to lead. When u r young u r like a tennis ball, u bounce right back, but I feel more like a fragile egg and must be carefulwith what I do.
I have a passion for flower gardening, but soaker hoses don’t work for me and I have to drag a 100 ft. heavy hose just to keep my beauties alive. I know I will pay for it for days, but they count on me. Moles have ruined my flowerbeds it took years to dig as they were mostly gravel. Then neighbors put up treesbetween us and the plants can’t get water under the trees overhang. Fall winter and spring r sooo painful due to the cold and rain. I miss working in a medical office and helping people.
I chose not to water with the heavy long hose several times this month as my son who would have helped me was a pallbearer for my husbands mom thursday and I must remember I am a fragile egg now, not a tennis ball and act accordinly. My husband has a stiff heart and he says it is heart disease and he needs to change the way he did things too. Mother nature grows at her own speed and if I try and keep up
pruning, I know I will hurt myself and be down for a week.
My husband and I are not close anymore. I can’t seem t drive more than 25 miles away from home, and speed bumps are
too many. I have tried everything to go into remission or get back to normal, supplements included, exercising in a hot tub. just accept what is, is”.had just had a c-section before my fm started. My father died when my newborn was 3 months old and I had a 2 year old who was in to everything.I don’t know how c- section could give u fm pain for the rest of my live, but it has. Just take it easy, never push to hard, ask for help I’m gonna be 50, can’t expect it to act and preform like it did when it was 19. god I wish my body would sleepI sleep about 2 times a week for a brieve period, never refreshing.

Hoping this won’t get posted twice as it doesn’t look like the first post went through. Is there a way you can all list specific things that have worked for each person who has found some success with diet/supplements/etc. etc? A list of things various people have found success with is great, but I’m thinking if others can see exactly what has worked for each person, then we can minimalize all the stuff we are trying by looking at one long list where things are even more hit & miss. I’ve tried tons of things to no avail. After 55 yrs. of this condition & progressing yrly., I worry about where I’m headed & desperate to find some relief from the never ending fog/pain/exhaustion. Seems like most are finding success with gluten free diets/dairy free/wheat fre/yeast free. Celery sticks are all that is left. Seriously, I am willing to change everything if necessary to get some much needed relief. If anyone has book suggestions for their diet changes with recipes, that would be great. Thank you!

Dale, I have been trying to find the answers to fibto for about 20 years and have come to the conclusion that everyone is so unique in their symptoms and in their response to treatment that there is no perfect treatment for our varied symptoms.
However, I have found some things that have helped and do provide some relief and also allow sleep from time to time. I have tried most of the prescription medications without much success with more side effects than relief. I have tried various dietary controls without any notable change. However, what has helped me is regular exercise even though I am in severe pain during and following with extreme fatigue. I do find that the exercise helps to minimize the pain throughout the remainder of the day. My main forms of exercise are walking, biking and swimming. As well I take vitamin D which has made a huge difference in my pain levels, L-Theanine, 5-HTP and Brad King’s Ultimate Anti-Stress pills (they are for the stressed immune system). I also take omega 3-6-9 and a multivit. Since I started this combination of medications along with my exercise regime about 4 years ago I am better than I have been in the past 20 years. I certainly do not consider myself in remission as fibro changes from day to day but I am content with the pain and symptom control that I now have on most days and that I now have far more good days that bad. Hope this is helpful. If you want more detail about the medications I would be most happy to share.
Here’s to a good day!

I should have added that the main treatment for symptom and pain control is learning to live with the illness and adjusting your life style rather than fighting against the symptoms. Change how you do things to lessen the symtoms rather than irritate them. Pacing and routine are essential in symptom/pain control. Not always easy but the results are worth the effort. Learning how to say “no” is a good start in learning to live with the symptoms.
I have been told by my rheumatologist that I have one of the most difficult cases with the most dibilitating symptoms that she has seen and yet she always tells me I handle it better than most of her patients. She is always looking to me for suggestions to give her patients on how to live with the illness. It is possible although it takes time and effort but it can be done and it is so worth having some quality of life rather than always battling against the symtoms.

Lady Di, thank you SO much! You are taking some things I haven’t heard of, so yes, I would love more info on the Omega 6 & 9, L-Theanine, & the anti-stress pills. I am taking 2000 mg. of vit D. Tried HTTP yrs. ago & was told it could be dangerou by a dr. who said you need supervision with it, & taking 100% B vits daily. I now know better than to listen to dumb drs. Pls. do share how much of each, where you get them, & anything else you feel pertinent. I recently quit the gym after 5 yrs. I was thinking I was 30 again & taking very difficult classes, when I couldn’t get the wt. off. I was taking water classes & the water was too cold. I was miserable when I got home & in more pain & fatigue & wondered why I was doing that to myself, so I admire you for hanging in there with exercise. I think the best I can do now is walking for exercise. Thank you again & So glad to hear you are doing so much better. There was a time with the exercise that I was pretty much pain free, but now have major hard areas around my ribcage & think they are pressing on nerves. Thinking it may be trigger pts. or Myofacial issues. I need to see the rheumy again in hopes he has better ans. than pain meds. Taking Tramadol, but really doesn’t do much more than take the edge off. I am very stubborn too. Lol. Again, thank you! Wishing you a comfortable day too.

After trying any and all RX’s for F.M., I have decided to try a more natural method of treatment, with my Dr.’s o.k. I am now taking 5-HTP to help me sleep, with marvelous results. I also take SAM-e in the morning, with marvelous results. DO NOT take these supplements if you are on ANTI-DEPRESSENTS!!!! I weaned off the Cymbalta with my Dr.s advice and was going to go on a different R.X, but after going off the Cym., I felt so much better. I was reacting opposite of what I should have while on it. I’ve been on this new therapy since May and also had a very inflamed gallbladder out in August, and had no flare-up either. I am still affected by weather changes, so I do still take Tramadol, but I am doing SO much better, I can’t believe it. I am so glad I took the bull by the horns, so to speak, and decided to make these changes. I felt I had nothing to lose, I couldn’t have felt much worse than I had been before the changes. I am 63 yrs. old and have had f.m. all my life, constantly for the last 30 yrs, before that I just had flares. I’m happy to say, I am doing Very well and hope it continues. I will continue to eat right and pace myself, so I don’t over-do any more than necessary, but I can enjoy life a lot more now and finally be social again.

Faye, so glad to hear you are having such success too. It is such a hit & miss it seems until we find the one or two things that can make such a difference. Thanks & continued success to you!

Adrienne,
I am so happy for you. I’ve had FM for about 16 years and after having it for about 4 years I had a long remission which lasted about 4 1/2 years. Like you , my symptoms did not go away completely but I was much more functional, able to go to nursing school and mostly able to live my life in a normal capacity. My remission stopped a year after my son was born and has been full blown for the last 7 yrs. I’ve never been able to identify what made it go into remission or what caused its return but I’m hopeful that I will experience another remission eventually. Enjoy it! Get those things done that you’ve been dreaming about and make the most out of every day!

For me is like a wave: sometimes you are ok and the next day you are in pain; the majority of the days you try to do all the things you need to do and try to don’t think in the pain, the pain is always present sometimes better than others.

While I can’t say I have had any remission over the past 8 or so years; once I got on board with a treatment program that actually helped and took on a lot of advice from having done the various CFIDS online self help courses and learnt as much as I could about this illness then I can say I have “improved” and certainly no longer am I getting “worse” although I still flare; so I am not sure that I can call it remission but I can say I am “better”; I now only work part time and rest fully on the days I don’t work; I am on a 24/7 opoid patch supported by other pain meds and supplements and a semi-structured schedule. I would love to not have to take so many meds simply to function and be paind free – but it could be worse!

When I was in my 20’s I went into remissions & the fatigue would be there more like a stamina issue, but nothing like what I deal with now. At 65, there are no more remissions, but I will keep trying everything I know to try to make some difference. I know we all hate taking pills/patches & fight it. Just finding a way to have a decent life with some normalcy is all I want now. I prefer to not take meds for the pain, but the Tramadol helps keep the edge off for me. Gentle hugs to all of you for a good wk. ahead.

Susie – Adrienne has been telling us how she does it in every article she posts. No secrets… Everything is out there for all of us to use if we choose to do so. Sometimes the fibromyalgia makes us unable to remember what we’ve learned, but it’s there.

Rocking Chair, thanks, & too many times I’ve ended up with a ton of emails in my in-box & neglected to read what shows up. Between the fog & clutter, well you know the rest of the story. Lol.

I am very happy for you, Adrienne. May your remission continue.

I’m desperate enough to try the gluten free diet now, so went shopping for a bunch of stuff. Ran into a woman whose friend just got diag. with FMS, & her dr. told her to get rid of the gluten in her diet! Hear many have had success with doing that, & takes about two wks. to a mo. Hope there is a silver lining out there for me, because I’m sick of spending $ I don’t have trying everything ever recommended & everything else in-between. I didn’t leave the house for 13 days after feeling so lousy & foggy & think sitting in the dental chair for two hrs. stressed my body out & put me in a biggggg flare. Will keep you posted.

Dale,

Along with the vitamins, massage, Lyrica, occaisional acupuncture, I use hot baths with epsom salts regularly. Its a great way to relax the tight muscles, and even if it only lasts for a little while, oh, well! Some relief is better than none, right?

Thanks! Haven’t tried epsom salts, (yes, I agree that however we can find relief is worth anything, & that is safe & used for ages, so not sure why I never thought about it) but have tried the rest, but a very limited massage therapy. What kind of massages do you get? I know some are worse for us & others are more beneficial. Appreciate it. Keep on improving!

I just turned 70 yesterday, and that also marked my one-year anniversary on LDN. This drug has made such a difference in my Fibro! Hasn’t kicked the fatigue, but much lessened pain, little fibrofog, better balance and reasoning and memory — very well worth $139 every 10 months!! Check out the LDN website and Google for lots more info.

Marti, what is LDN? So glad you are feeling better & Happy (belated) Birthday! Interested in hearing what that is, so thank you.

My own symptoms seem to be getting worse and I’m begining to wonder if FM is what the doctor has told me I have since they can’t find something else. Maybe I think that because I don’t want to believe that a previously healthy active person can just turn (almost overnight – in my case I seemed to have come down with flu like symptoms with no fever and never got better) into a completely different person! I never have felt good, not for one day in almost 2 years. I have aches and pain every min. of my life and I am so exhausted that I now plan my life around how little I know I can do. I have become so depressed because I feel that I may never know what it feels like to “feel good” ever again. The doctor told me to exercise. There is “no reason I shouldn’t” Really?? If he was in my shoes he’d know better. I pay dearly if I even do too many chores. I can’t take the meds as the many I’ve tried make me feel worse or unable to drive. I tried many expensive vitamins and minerals with no help. If there truly is a remission or recovery secret to this please let me know because my life has become almost unbearable – I know this sounds horrible but if it were not for my kids……seriously, does all of this suffering have a point? To those who don’t believe us that there could be such an illness – I used to learn my daughters cheer routines and went out dancing at night clubs! Now, I don’t even go to the movies with my husband for fear of being in one position too long. I wouldn’t wish this on anyone

Tica,

Have you had your thyroid checked? Any TSH over 3 is way too much! It takes a bit to get it under control, but that makes a HUGE difference in how you feel. If your doctor is a twit, fire him, get a different one. If you have a bad mechanic for your car, you wouldn’t go back, right??? The best of luck to you.

Tica69, You just may have ended up with “this” from that virus you had. I do believe so many of us have viral issues & if I can suggest asking your dr. to do these tests for you, perhaps he can start you on anti-virals? Cytomgegalo virus/HHV6 from chicken pox & Epstein Barr from mono. I have the three high titres in my blood, but drs. will tell you that everyone has been exposed to those same illnesses & shouldn’t cause issues. If caught early enough, maybe the dr. can help with getting rid of the viral issues. Everyone on this board has wonderful suggestions. Sometimes it takes us many many tries of various things, as you can see, but I refuse to give up finding a happier, more fulfilled life & have had this for 55 yrs.

It hasn’t been an easy rd. at all, & I truly understand how you feel, so pls. hang in there & continue to stay on this board with so many who have seen success as well as understanding your illness. You need their wonderful moral support, as I do. Good luck to you, & yes, people have gone from being fine to “this”, so I believe you & so do the rest of us dealing with it. Good luck

Thank you Dale and others all so much for the kind words. I believe that the only people who can truly understand what I’m going through are others who are experiencing the same symptoms. That is why I was venting here! When my friends and family see me go about doing things they think I must be OK. But I’m not OK! I’m never OK I just am trying not to show it because who wants to be around someone complaining all the time. I’m just going on because I don’t know what else to do. I will try to keep looking for answers from my GP because he seems to care the most but I am not getting my hopes up too high. For now, I am just accepting what my life is and try not to let it take away every joy that I might experience.

Tica, I just listed meds that might help you. Here are two that give me energy.

L-Lysine -1000 mg in the morning
ALA-alpha lipoic acid 2×200 mg.

I know all about meds that DO NOT WORK and just give you more problems.
Nobody considers that we HAVE ALLERGIES to almost everything.

Ewa, glad you posted, as I will print out the info & try that eventually too. I am now on so many things all at once from desperation, that if anything helps, chances are I may not know which of the four things is helping. Take too much stuff really that are supplements. Thanks for sharing.

I have had fibromyalgia for 10 years. I was totally incapacitated for about 4 of those years & didn’t work. I’ve been in remission for about 1 & 1/2 years. Just started working about 3 months ago. It’s been a long, painful, strange trip. My only lingering symptoms are pain in my lower back in am & if I stand/walk too long, some continued anxiety…if I am overly tired & stomach issues. It’s become easier to ignore the low level of pain that I have…I have also changed careers, to a lower stress job with less hours, also I happen to be doing something I love this time. I am grateful for the changes in my priorities in life. It is the most precious gift I got from having fibromyalgia.

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Sheilaqu-May I ask how you got control of your life once again? Special products, vitamins, etc. etc. Thanks & SO glad you are doing much better!

Hi Adrienne. I know this is an older article, but I am hoping you are still doing well. I came accross this while searchinf Fibro and remission. I was curious to know if it does go into remission. In November of 2011 i strted to feel really good and decided to go off the Neurontin I was taking. The only thing I am on right now is the trazadone for sleep. I haven’t felt this good since before my symptoms started in July of 2007. I had some very bad years after. I was on Cymbalta for 3 years, which did help, but I still felt miserable. Anyhow, I have changed nothing. Not my diet, nothing. After starting to feel better I have been working out regularly. But excercisiing is not what contributed to my feeling better. I didn’t start that until after the fact. I see many people asking you what has contributed to your feeling better… and for me, nothing contributed, it just happened (luckily). I haven’t seen my Rheumotologist since being off my meds and feeling great, but did call to let them know. I have a appt at the beginning of March and I am just curious to see if she has seen this happen in her other patients. Well I just wanted to share my experience and tell you I am happy for you. I hope it is long lasting for both you and myself!

My aunt has fibromyalgia. She complains of the pain and now, after quitting a stressful job, at 22, I believe I am experiencing some of these exact pains. The doctors do not listen unless you scream, which is very sad. It’s true, nobody understands unless you can actually step in someones shows. It’s tough but I’ms stay positive. Stiff neck, wierd pains in my thighs, shoulders. I’m taking Robaxin but I dont think it’s doing much.

I also feel this pain in my ribs and it all started with pain in my chest. Then , wierd pains in thighs, now a stiff neck and shoulder. It’s so annoying

Jerilyn, mine used to go into remission when I was younger. My pain would be much better & my energy as well. I no longer go into them anymore. I think a lot of it has to do with sleeping. Many of us don’t go into all the stages of sleep, & especially the restorative, deep sleep. Keep doing well!

Ana, it is hereditary. Not sure if anyone has ever heard of the book What Your Dr. May Not Tell You About Fibromyalgia by R. Paul St. Amand M.D. & Claudia Craig Marek. It is about the Guaifenesin Protocol, & can Google it. I have many friends who have gotten their lives back using it, & not easy because your diet has to be very clean, nothing with aspirin can be used on your skin, like many makeups, lotions have, because it blocks it, but the Guai. will reverse the condition supposedly. It describes how the condition is caused by the inability for the kidneys to rid phosphates in the body.

The dr. & three of his girls have FMS, & he believes FMS/CFIDS are one & the same & def. hereditary. Hope this info isn’t something I shouldn’t be posting, because I have nothing to gain by it, but to try to help others. I haven’t tried the entire protocol yet. I have taken the Guai., but didn’t clean up my diet, nor determine what I am using that may have aspirin in it as an ingred. I know some sites don’t want anyone selling anything naturally, but would feel remiss if I didn’t share this info that has helped so many. I am still on my very long journey to recovery! I do know sugar is the worst thing for all of us, & with my major fatigue, the first thing I reach for, for the emotional comfort as well as the energy. Sometimes it helps, sometimes not.