So confused - fibromyalgia and bones aching severely

I very much understand what you're going through. Managing wide spread chronic pain and symptoms is quite taxing physically, emotionally, and behaviorally. Its good that you're interested in understanding and learning about your condition. When I attended Mayo's 3-week Pain Rehab Center's comprehensive program, I was able to learn the science of Central Sensitization Syndrome (CSS) and how the central and peripheral nervous systems are big culprits in causing havoc in our bodies. You may be interested in this conversation about CSS and connect with others experiencing similar situations-

Has Anyone Been Diagnosed With Central Sensitization? -

How unfortunate you do not feel supported by your partner. Maybe they truly don't understand what you endure.

Mayo Clinic's Dr. Sletten beautifully explains chronic pain and symptom management here in this video:

Perhaps watching it together with your partner will give clarity and perspective on living in chronic pain, help provide the science behind pain, and offer some ideas for both of you to move forward in management and understanding.

Hang in there. I know it's challenging, but keep your chin up and know there is always hope and opportunity to grow, learn, and find joy despite conditions. You are much too young to be swallowed up by pain and not feel that you still have value. You will find YOU again! I'm looking forward to your thoughts on the video and whether it resonates with you. I hope it's a lightbulb moment. Will you please get back to me with your thoughts or questions? Have a pleasant evening.

Hello @raepent1, just checking in - how things are going for you? You were concerned about how to narrow down pain sources and origination in your nervous system. Have you had a chance to watch the Central Sensitization video from Dr. Sletten to gain any clarity?

I recently came across this helpful comment from @elmay who's dealt with fibromyalgia for a very long time and offers encouraging words about finding help through cognitive behavioral therapy (CBT) -
https://connect.mayoclinic.org/comment/913327/

Her full discussion on CBT for chronic pain is here:

Cognitive Behavioral Therapy for Chronic Pain -

I'm wondering, @kireraw, @raepent1, @daliea - have you considered CBT as a complimentary strategy for living with fibro or other chronic conditions?

@ellyons87 Wow you have a lot of problems I'm so sorry for you .Have you seen a rheumatologist ? They deal with muscles and bones If you haven't I'd suggest you see one at Mayo or any University hospital for help .

How were you diagnosed with Sjogrens? My ANA is negative but I have been diagnosed with other autoimmune disorders such as autoimmune pancreatitis, and UC plus suspected to possibly have RA.

Hello Ellyons87…….Firstly, you are not imagining any of the symptoms you are feeling and describing. More to the point, you are trying to put your finger on exactly what they are and trying to understand and explain them better because they are all so recent in your personal experience. I’ve been personally experiencing and debilitated by CFS/ME & FIBROMYALGIA for the past 32 years. The amount of pain, exhaustion, muscle ache, soreness, weakness, debilitation and general disbelief that one could feel so poorly from and try to live some kind of gratifying life is mostly beyond anybody’s comprehension. Unfortunately, what you are experiencing now can get a whole lot worse for a much longer period of time……or, it may not! Every patient is different. However, it’s been my personal experience and the hundreds of others that I’ve read about and researched that if you experience severe symptoms in the early stages they are more likely to exacerbate and continue than not.
My first recommendation is to find a pain specialist who will work effectively with you to reduce and manage the pain as best as you can. Unfortunately, in this period of time in our country, it can be be very challenging to find a pain doctor or clinic that will prescribe you the kinds of medications that are strong enough to provide the level of efficacy you require.
I would concurrently prospect for and find a “PALLIATIVE CARE” specialist to work with to assist you. It’s their job to provide medications that will assist and prevent you from being tortured by intolerable, intractable amounts of moderate to severe to indescribable acute pain or acute chronic pain.
I’ve tried everything there is and then some and only opioids have been able to assist me adequately enough. I’ve been using them safely for 32 years!
Like anything new in your life, it will be up to you to read and research everything you can about pain, managing severe chronic pain and what your options are. Unfortunately, you won’t find a very “empathetic” medical environment to assist you. It’s not my intention to be negative but to realistically inform you about the current reality in our woefully inadequate field of effective pain management available in the medical field!
Managing your symptoms as best as you can will help some. No doubt you’ve already experienced “PEM,” POST EXERTIONAL MALAISE! You feel much more fatigued, exhausted and in pain following any kind of physical exertion. You will also experience this as a result of any kind of mental, cognitive, emotional, psychological or physical exertion. It can result from only a minimal or moderate amount amount of the above types of exertion.
I also suffered from “CHIARI MALFORMATION” concurrently so I was in a “Perfect Storm!” I had a combination of neck, head and brain surgery in 2001 to address that. However, it did not improve the symptoms I was directly experiencing from CFS/ME and FIBROMYALGIA.
There is much you will need to learn when able. However, when people, friends, family and misinformed doctors tell you that all you need to do is exercise more and push yourself more you should politely thank them for their uneducated and misinformed advice and don’t do any of it! There are plenty of reliable patient websites to become properly informed and they will serve you well.
I wish I had better news but the reality and facts of the matter are that these are horrible disease states to manage and live with.
You may write to me at anytime if I can be of any additional assistance to you.
I wish you the very best,
GODSPEED
Phil
sagehawkmz@aol.com

I believe you might have Fibromyalgia but you may have other issues. I have had Fibromyalgia since 1995. I had those headaches and some of the same issues you have listed. The headache finally stopped about 3 years out. Stress makes your pain worst. I know you won’t believe this but exercise really helps your symptoms. I have been seeing an acupuncturist every month since 1997 and would not stop his treatment. He not only helps me with the pain, sleep and energy. I also take Trazodone at night.

I find I clench my jaw and other joints; they get tired, are painful and then the muscles around the area start in with referred pain. A massage, stretches learned at PT, epsom salt baths and general movement can really help. This is not a condition where you rest to relieve it: movement is key. Of course, food intolerances and lack of hydration can play a part. I've had shots in the joints, which sometimes helps, but for the long term, stretching and movement will help prevent pain.

Hello……I’ve had debilitating CFS/ME and Fibromyalgia for over 30 years. It’s been my personal experience and that of most patients that exercise actually exacerbated your symptoms. Whether one has PEM, “POST EXERTION MALAISE” or something similar, any kind of exercise or physical exertion can really be difficult to manage. Of course, there are always exceptions and anybody who can tolerate physical exertion without exacerbating their symptoms and debilitation are fortunate.
However, reading and researching most of the evidence these past 30 plus years, exercise is something that is really not promoted.
It was thought to be beneficial in the early years for patients with these disease states. However, that was mostly predicated on the belief that any exercise in general is beneficial to the body. It just isn’t true nor does it serve the well-being of most patients. Of course, doing whatever amount of stretching, yoga and exercise is beneficial as long as it doesn’t make you feel worse.
I was a very fit athlete participating in a number of sports in high school and college. As a result, I am very well versed and experienced in knowing and experiencing the difference between normal muscle soreness and fatigue that is very short lived after exerting maximum physical effort versus the very painful, long lasting pain and extended fatigue and exhaustion associated with POST EXERTIONAL MALAISE. This is nothing to take lightly or abuse.
Quite simply, if exercise on whatever level makes you feel better than it’s obviously tolerated and appropriate. If it’s anything less than that…….don’t do it.
It can spin you into a severe relapse. Just an alternative view to some of the other comments made above.

Thanks for responding to the email. I am so sorry to hear about your health issues. Fibromyalgia is mostly disabling . It is terrible when doctors and people who don’t understand the effects that this has on your physical and mental health. Because of the stress from this disease I had shingles, and a stroke early retirement was my only option. I try to stay positive and don’t talk about the pain which I have had since 1996. I now take Hydrocodone as my last resort.In truth I am really tired of this Fibromyalgia and all the pain.

Try to have a good day.
Judy