Apparently it never gets better. You just learn to deal with it.

[OutcastWithAmbition]

We are with you OutcastWithAmbition...my hands hurt too much to type lots but just to say we get it we care x

Thank you Willow. I know that feeling well. I have only just joined this community but its amazing to know other people understand. Take care petal xx

 

[Tony]

No one ever gets better? Is this true?? No one?? The last thing I would want to do is promote false hope if none exists .. but I seem to be in control of my symptoms. Now ... it could very well be that my ability to control my symptoms won't last I suppose .. or maybe I don't even have what you have .. considering the symptoms and diagnosis are difficult. But I sure seemed to have pretty much all of the symptoms.

 

[SierraTrout]

Hi Tony, I am very happy for you and a little curious. When you say that you have your symptoms under control, does that mean that for the most part you are symptom free? If so, I'm curious as to how long you had fibro symptoms before you got them under control; and how long the symptoms have been under control. I am experimenting with diet, exercise, medications, etc., but have yet to find the right balance. So far the Whole 30 elimination diet, gentle yoga, and 30 to 40 minute walks (almost daily if I'm able) have been the most helpful in terms of pain; but the overwhelming fatigue and occasional flares still bite me in the butt. Again, really glad you're doing so well. You give me hope!

 

[gryfalcon]

I'm so sorry!

Have hope. For us, it DID get better. It's not cured, but since that first diagnosis, it has gotten probably 80% better. To put it into metrics, from dropping out of jr. high, because an hour out of the house caused a flare that could disable my daughter for a week, we have moved to where she can have a part time job, climbing stairs and carrying trays 35 hours a week. I made another post where I listed all of the supplements that she uses to accomplish this. If she stops using them, she goes back to those dark days, so it's a lifestyle.

The point is, you CAN get better. For us, the answer was not with a doctor or a medication, but it's different for different people. There is research that shows that medications make 50% of fibro patients feel worse. So, we quit going to the doctor after trying their medications, and learning what we needed from CBT and biofeedback. We had seen all their tricks, so it was time to move on. The medications do make you feel "different'. In fact, Lyrica gave her dark moods and horrible, slasher dreams. I've spoken to other people who had those same symptoms.

She still has a lot of nerve pain, but finding ways to strengthen her body with supplements, relieve some of the achiness, and when the supplements made her start feeling enough better, exercise, has helped her to have the strength to cope with the pain.

If you haven't tried it yet, I suggest Natural Calm - 4 whole grams of magnesium in a hot drink every night, methyl-folate or metafolin (you probably have MTHFR), methyl B12 -- you use more b12 when you use methylfolate, and Twinlabs Stress B (b vitamins are essential to repair and maintain the nervous system) and krill oil (helps heal the brain, and is a blood thinner -- there are circulation issues with fibro. Krill oil is easier to digest than fish oil).

If you get a chance, I suggest you check out my other post for a full list. IT REALLY HELPS. A LOT!!!

Meanwhile, best wishes on your journey. It gets better.

 

[Tony]

I became symptomatic in 2009. My symptoms included sleep onset and sleep maintenance insomnia (I couldn't sleep at all), shaking, nervousness, headaches, severe brain fogs, inability to think, shaking, difficulty speaking, tremor, blurred vision, ... muscle and joint pain was the last symptom to develop .. but I only had that for 3 months as at that point I had most of my 'treatment plan' figured out and one final 'tweak' got rid of that too. The pain was a very weird pain in my arms and elbows ... deep and clear ... not achy like regular muscle pain. I also had difficulty recovering from exercise!

It took me about 4 years to begin to figure things out plus another year to refine it. At the moment I am not cured since if I don't follow my 'treatment' I begin to feel symptomatic and I'm still learning more. For example, I still have some trouble with sleep maintenance insomnia but it's not bad enough to require sleeping pills. I'd say I've been under control of this well enough for 2 years now that no one would suspect I had an issue at all.

 

[moe1959]

You echo many of my own frustrations. I myself have always been a driven person, never sat down . Go go go. First one to volunteer. You know the story. I'm sorry your suffering, it's no fun feeling old before your time. Hang in there, your not alone, unfortunately. I pray there's a cure in my lifetime. Stay strong, take a break for a couple days from journaling, watch something o. TV that makes you smile. If you can, go for a short walk. Do something your passionate about, only on a smaller scale. Don't give up.

 

[SierraTrout]

I became symptomatic in 2009. My symptoms included sleep onset and sleep maintenance insomnia (I couldn't sleep at all), shaking, nervousness, headaches, severe brain fogs, inability to think, shaking, difficulty speaking, tremor, blurred vision, ... muscle and joint pain was the last symptom to develop .. but I only had that for 3 months as at that point I had most of my 'treatment plan' figured out and one final 'tweak' got rid of that too. The pain was a very weird pain in my arms and elbows ... deep and clear ... not achy like regular muscle pain. I also had difficulty recovering from exercise!

It took me about 4 years to begin to figure things out plus another year to refine it. At the moment I am not cured since if I don't follow my 'treatment' I begin to feel symptomatic and I'm still learning more. For example, I still have some trouble with sleep maintenance insomnia but it's not bad enough to require sleeping pills. I'd say I've been under control of this well enough for 2 years now that no one would suspect I had an issue at all.

I admire your persistence in figuring out what works for you. Even though I have tried to keep a daily log of symptoms and any new "remedy" I'm trying, I often make the mistake of implementing too many new remedies at the same time. In the past two weeks I've had noticeably less pain but don't know if that's because of the elimination diet, the increase in frequency and type of exercise, or Bowen therapy, all of which I started in the month or so preceding the improvement. Conversely, I've had more exhaustion in the last two weeks: am I eating enough of the right foods or am I exercising too much or doing the wrong kind of exercise? I guess I should be more scientific and introduce just one variable at a time, but oftentimes I'm too impatient as I want to feel better NOW. Back to the drawing board for some fine tuning.

Happy Friday and hugs to all.

 

[Tony]

Thanks Sierra ... I am definately a little OCD with my spreadsheets and data gathering

I should mention that I went down numerous false trails myself and eventually learned to not trust anyone's preconceptions ... including my own, my Dr.s, and my nutritionist's. I tested and retested .. I tried to make myself feel better and I tried to make myself feel worse. All data helped! I also felt like I had nothing to lose in trying anything!

Today, I look at the whole problem (for me) as a 'fuel' issue. My Keto diet is simply giving me a more stable & reliable fuel supply for my body and brain .. as long as I actually remember to eat enough and follow the diet.

 

[Julia53]

Hi...I am new to all of this, having only had a confirmed diagnosis of Fibromyalgia a few weeks ago. I don't know anyone else with the condition, and I feel a little bit insecure about it all. I also suffer from bi polar disorder...I am worried that people will feel that my pain and memory loss are all in my mind! Please can anyone reassure me that Fibromyalgia is REAL! Thanks, J
Julia

 

[SierraTrout]

Welcome Julia! You've come to the right place as you'll find a lot of support on this forum. My first friendly suggestion would be to re-post your post as a new thread under this same category of "Newly Diagnosed"; that way, more people will see your post and be able to help you. Please don't despair. Here you will find out just how real fibromyalgia is and how others are coping with it.

 

[SierraTrout]

Thanks Sierra ... I am definately a little OCD with my spreadsheets and data gathering

I should mention that I went down numerous false trails myself and eventually learned to not trust anyone's preconceptions ... including my own, my Dr.s, and my nutritionist's. I tested and retested .. I tried to make myself feel better and I tried to make myself feel worse. All data helped! I also felt like I had nothing to lose in trying anything!

Today, I look at the whole problem (for me) as a 'fuel' issue. My Keto diet is simply giving me a more stable & reliable fuel supply for my body and brain .. as long as I actually remember to eat enough and follow the diet.

I got a laugh out of your OCD comment as I have a bad case myself. I keep adding more and more columns to my symptom/activity log so I can track more things. Very interesting that you sometimes tried to make yourself feel worse -- I hadn't thought of that but can see the value in it. And you're right, there's really nothing to lose by it.

Tony, is your brain fog gone and are you able to exercise as vigorously as you did prior to being symptomatic? Just two years ago my muscles were noticeably toned from personal training and I had great cardio stamina on the hiking and biking trail. Now I've lost the tone and feel so weak and wonder if I'll ever be able to get it back. That and my mental clarity have been the hardest things to lose. Thanks, and have a great day.

 

[Msfibrofoggy]

Reading you message actually made me inhale deeply and exhale slowy.(In a good way)b Think Lauren Hill. I was a bartender as well, working 8 to 14 hour shifts. Always on my feet, snacking on cold pizza when I could. I am not sorry at all though for my last post. Two weeks after that post I didn't try to kill myself. I was determined to not live another day. At the time I was angry and felt unfortunate. I thought everyone around me would have a higher rate of success if I wasn't there bringing them down.
But, I think you should know that it is not all in your head. Yes it is a neurological syndrome but all the physiological symptoms happen after you try to be nor

 

[swharris]

I echo the thoughts and feelings of everyone on here. I feel totally isloated and alone all the time even though I am married and have friends and family. No one understands and when someone complains about something trivial, I just want to punch them. No one has any idea what this is like.

ANYWAYS - a thought. Many people believe that fibro is a condition that occurs because of brain chemical imbalances and use medications like NMDA receptors to treat it. I am giving it some thought and may try to start taking one of them.

 

[Heavenjumper]

Msfibrofoggy, I'm not much older than you and had to stay using a cane recently as well. I hated to do it, but had no choice because I lost use of my left leg for 3 weeks (still have weakness and have to continue using the cane). I know all too well the looks of pity you're talking about and especially being so young it does suck. However, the cane has honestly helped me enough that I've learned to just ignore the looks and such because I know the benefit I get compared to not using it. Another thing I've gotten used to when grocery shopping is using the electric carts instead of trying to walk the whole store. That took getting used to even more looks, but it saved me quite a bit of pain so it's worth it in the end. I'm right there with you though on lessening to cope with limitations when I'm still young enough I shouldn't have any limits. It sucks, but we have to find a way to make it work.