need advice

[JayCS]

it is all happening in the cns in the brain

I agree with the rest, but I'm pretty sure mine is all happening in the mitochondria. 'My' brain doesn't fit that theory.

 

[sunkacola]

There's no proof of where it comes from, or why, what the mechanism is or what exactly fibromyalgia is. Everything at this point is still only a theory.

 

[Mape]

While individuals with fibromyalgia may experience muscle weakness or reduced activity due to pain and fatigue, deconditioning itself is not a confirmed cause of fibromyalgia. Muscle deconditioning may be a consequence of the reduced physical activity that some individuals with fibromyalgia experience due to pain and other symptoms.
It's best to consult a medical professional who specializes in fibromyalgia or chronic pain management.
Your proactive approach to seeking solutions is commendable and reflective of your strength.
You are an inspiration to others facing similar challenges.

 

[Mape]

I had a similar thing, I had a high antibody count but everything else was normal and my symptoms didn't match any known autoimmune disease. It sounds like it might be CFS as well as fibro? If it is that and you keep doing lots of activity it will get worse. Its important to really slow down and be careful about your movements and to care for your body. The more you worry and tense up the worse it will get. There is so much stress in having an illness and getting no answers from doctors, it makes your head just explode. I think the anxiety and panic are one of the worst aspects of this, I feel really shaky now, something I never had before. I find CBD oil helps, it helps me sleep and takes the edge off the pain, really reduces tingling and pins and needles. I also do yoga (lying down) and meditation (lying down) which helps with the anxiety but doesn't do much for the pain. It helps me to live better with it all. I also take painkillers - just paracetamol and ibruprofen, they do help a bit. I've also tried pregabalin and gabapentin, but I find the CBD oil works better and doesn't have so many horrible side effects. I was given amyltriptyline but it made me dozy and I found since there is a link with Alzheimers in older patients. Hope this is helpful, I know how hard this is and how lonely, make sure you are as kind as you can be to yourself

I can definitely relate to your experience. I too had a similar situation where my antibody levels were high, but the rest of my tests came back normal. I've found that incorporating some holistic approaches can be helpful.
CBD oil has been a game-changer for me. It aids in managing pain, reducing tingling and pins and needles sensations, and even promotes better sleep. I've also found solace in yoga and meditation, although I've adapted them to be done while lying down. While they might not completely alleviate the pain, they do wonders for soothing anxiety.

 

[stacyh0122]

Hello FibrofighterCFS. I have read your initial post and a few of your replies to others. I have had FM for six years now. I would like to share a little bit of my experience and tips, for what it is worth. I am a 45-year old woman, with some of the associated conditions including digestion issues, depression/anxiety, raynaud's, migraines, etc. As far as the doctor's comment, I do agree that our mind affects our physical health in SO many ways. Have you heard of the brain-gut association? Fibromyalgia symptoms can be quite insidious, in my opinion. I do agree with others posts that staying active, yet listening to your body, decreasing stress, watching what you eat, keeping your mind active and focused on positive aspects of life, adequate rest, and nourishing your soul are paramount. My symptoms go up and down, and I go through slumps of feeling discouraged, but then try to turn my focus back to everyday being a gift, and being grateful for even the smallest blessings. I read a quote by C.S. Lewis (?) that stated pain brings us closer to God. I like to think he was referring to any type of pain (physical, mental, emotional, spiritual) and to all religions and/or any higher powers. As my counselor said, "I can push through (the pain) when it matters". Lastly, I had the joint swelling when I would overdo certain activities. I think it was due to just overuse of that joint after long periods of inactivity. Stretching the muscles and joints before exercise, including yoga, before activities such as walking around the block really helps me, plus pacing my activities, such as 30 minutes of raking leaves instead of the entire front yard. Also, I still have minor decreased sensation on my left side following an episode a couple years ago. I went to the hospital because to rule out a stroke. The issue was associated with my migraines according to the doctors. I left my full-time administrative (disability claims processing) job so I was no longer tied to the computer screen and under the pressure of making production quotas. Additionally, I took some Cognitive-Behavior Therapy and Chronic mental and physical illness online classes and group meetings, which were invaluable also. What really made me decide to work on building myself up in all areas, was a comment my husband made, which paraphrased was, "You have really gotten weaker the past few years and will continue to just become more weak if you don't do something different". I know that does not sound very profound, but it made me realize that the pain will be there anyway, so I might as well try to get my body and heart stronger in the meantime. God bless you and everyone who is living through chronic pain.

 

[sunkacola]

You have really gotten weaker the past few years and will continue to just become more weak if you don't do something different". I know that does not sound very profound, but it made me realize that the pain will be there anyway, so I might as well try to get my body and heart stronger in the meantime.

Hear, hear. I think this is of great importance. It is so easy to do less and less, because we are in pain. But that will only result in greater losses and greater pain. I know for myself, and I think for everyone, doing very little in a day debilitates not only the body but the mind as well. No one can be happy or fulfilled, or even feel neutrally OK, if they are doing nothing all the time, not getting enough physical activity, not accomplishing anything during the day. Riding that line between listening to our bodies and not overdoing it, while still keeping as active as possible, is challenging but vitally important.

 

[JayCS]

Hi Stacy, fully agreed with your experience, just this point is something that may be different for me:

As my counselor said, "I can push through (the pain) when it matters".

my husband ...... made me realize that the pain will be there anyway, so I might as well try to get my body and heart stronger in the meantime.

so I agree with sunkacola's summary

Riding that line between listening to our bodies and not overdoing it, while still keeping as active as possible, is challenging but vitally important.

I can always push thru the pain whenever I want to, even when it doesn't matter, but it's very unwise for me to do so, as the backlash on my energy/fatigue is enormous, completely out of proportion. And the problem is: whilst I'm pushing thru, I don't feel it, the Ache is much less than when I stop. So when I feel it's going up to a 3, it's actually a 5. And 5 mins of that will usually take about an hour or two to recover from, the more I go above that the longer the recovery time. So I need my people to remind me, they can see my face and lips go pale, my performance decrease, and if alone at least I need a break to sense into my body.

So for me it's not the case that the pain will be there anyway. Yes, an Ache of 1 or 2 is there anyway and doesn't create a backlash, but as soon as I do anything, that includes things like talking it will go up quickly and increase other symptoms like fatigue as I said, plus local pains, insomnia etc which becomes a vicious circle. On the other hand not doing as much as I can like you both say can again increase pain by underuse.

Finding that balance is a moving target for us all. And my best ways of keeping up with the moving target is keep "moving" most of the time, with stretches and slow movements and regularly/continually testing to see how much more I can manage without increasing the Ache too much, always "on my toes".

 

[ayassresearch]

I understand your challenges with fibromyalgia. Here are some brief suggestions:

1. Seek multiple medical opinions.
2. Manage pain with medications and therapies.
3. Prioritize mental health support.
4. Consider gentle exercises and dietary adjustments.
5. Join a support group.
6. Practice mindfulness and relaxation techniques.
7. Keep a symptom diary.
8. Make lifestyle adjustments.

You're not alone, and there are ways to improve your quality of life with fibromyalgia.

 

[Auriel]

Nice list

 

[shaanny]

Hi fibrofighter, and welcome to the forum.
You say nothing you have tried has helped so far, and I wonder what are the things you have tried. If we knew what you have tried so far it might help us to give you pertinent advice. I wrote a post of advice on how to manage fibromyalgia, and I will put a link to it t the end of this post. Please read it and consider trying some or all of the things I talk about there.

I don't know what you mean by:

Maybe you could clarify that?

Panic attacks are very stressful on the body and if you can get those under control, it will help a lot. I m going to assume that you have a racing heart as part of that, because that is one identifying characteristic of a panic attack. If so, get yourself a pulse/oximeter. About $15 at a drug store or online. When your heart starts racing, put it on your finger and concentrate on it. Just sit and stare at that heartbeat number, and will it to come down. Speak to it, internally or out loud, using a gentle voice as you would to calm down a child or animal, and tell that heart rate over and over to come down. As it does, tell it "good job". Keep doing this and don't look up from it or do anything else until your heart rate is normal and your panic attack will be gone. This is a very simple and effective form of biofeedback that really works.

If your panic attacks come on because you worry about things, find ways to distract yourself from the worry. Go outside, look at the stars or the clouds or the trees. Do a hobby. Come here and tell us your worries so we can help you overcome them. Being anxious or worrying will exacerbate your symptoms.

There are so many things you can do to help yourself, and when you do those things it is very empowering. You will gain confidence and learn that, while you cannot make fibro go away, you can learn to live a good life with it by learning what works for your body.

doesn't mean you are imagining them. But the mind and the body are one....there is no separation. Everything physical is also mental and everything mental affects your physical being. So don't take it as an insult. Now, if your doctor doesn't listen to you or is not helpful, get a different one who is better for you. But know that your mental state is crucial to health and well being for everyone, especially people with chronic pain conditions. The healthier you can be mentally and physically the better your life will be even if you still have pain.

We are here to help, answer questions, and cheer you on in your efforts. You are not alone.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org