need advice

[fibrofighterCFS]

I am new to this forum. I am a fibromyalgia sufferer. I do not have any motivational story to share but I am here looking to seek one.
It has been 6 years since my diagnose. I am getting a really hard time finding a balance where I can live my life how I want and control my symptoms. Everything is getting worse with time. I cannot understand my own body. Every day there is a new symptom to deal with and instead of getting better it deteriorates. Not a single thing I did has helped me so far. The strength in my body has gotten below zero percent. every muscle in my body hurts and now its effecting the joints. my larger muscles groups have deconditioned so much with time that now its effecting my joints. every tendon in my every joint hurts. now I started having joint effusions also because of weight bearing. I got tested for other auto immune diseases also and every time tests come out negative. my mental health has also taken a toll. I am having these frequent panic attacks from past few months now. I do not know how to control those either. I am looking for answers. If anyone has any suggestions or stories to tell please share. after my first panic attack in march I felt weakness on my right side. i thought it will go away. 4 months has passed and nothing changed. I got it tested to see if nothing neurological but thankfully all tests came negative. I feel numbness on the right side with different kind of sensation. even when i sit on floor, i cant straighten my right leg after standing up. My dr. said that the weakness on right side is mental but I don't believe her. I can feel the physical symptoms and its affecting my joints and muscles. if anyone has such experience also, please share. I am posting with a lot of hope.
Thanks

 

[sunkacola]

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:

now I started having joint effusions also because of weight bearing.

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.

When your doctor says your symptoms are mental it doesn't mean that they are not real; 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

 

[fibrofighterCFS]

Thank you so much for your detailed reply.. means alot to me. when I was diagnosed my doctors told me to start doing mat exercises like pilates, Tai chi, swimming, yoga cycling and all. I used to ride cycle before but with time my quards became so weak that I couldn't even ride a block so I stopped because it became painful. then I took some Tai chi classes but I couldn't keep up with that, I started doing light cardio at home but with I realized that my body muscles started trembling even on bridges. In between I tried running, walking, swimming . But with each activity new symptom rose. Swimming made my shoulder joints painful . 2 years passed and the pain gas gotten worse on the shoulder joints. Running made me excisevly fatigued . Even few blocks used to make me fatigued for two weeks. Walking made my foot pain worse as I have history of plantar fasciitis. In between I tried psychotherapy on and off . I did physical therapy also many times:/ I am still doing physical therapy.. but with physical therapy they only target one part.. anyways I still can't find the balance what activing can help strengthen my muscles and keep me less fatigued. I am the stage that even massage makes feel numb n fatigued .. but I still try to do. I take frequents epsom salt baths too.. the pain is just getting worse. with this right side weakness the ankles are getting affected now. when Dr said it's mental I wasn't insulted. I was just trying figure out but the symptoms are not just psychological.. like upon standing for more then 3 hrs ankle joints filled with fluid n it nflamation. My theory is as leg can't bear weight so all the weight is going on ankle and it end up being feel inflammed. Dr has done the test for rheumatoid but it came out negative.. if it's psychological and just in my head then why joint is getting affected. it's just don't make sense. My primary has done all the tests she can think of and all came negative. Ingot autonomic testing done last year and inflammation came in my autonomic nervouse system. But according to my primary they did further testing and everything is normal.. but I don't understand. panic attacks are because of stress. I have to deal with that too. But right now I am not in a right state physically mentally. I am afraid to end up in wheelchair. No matter what medication I take because I have tried several and what activity plan I do nothing helps.

 

[fibrofighterCFS]

I have read ur post even before posting thread here.. for everyone different things help.. for me I don't know what will happen for at least getting back to shape and then balancing the life

 

[johnsalmon]

I don't know what you mean by:
Maybe you could clarify that?

joint effusions is fluid in the joints its a non fibromyalgia problem

my larger muscles groups have deconditioned

fibromyalgia does not actually affect the muscles ie there is no muscle loss of condition or wasting if you are getting wasting and loss of strength then it may be time to see a neurologist and let him do some biopsy or connectivity tests

 

[fibrofighterCFS]

That's what I am Saying. They have been doing all these tests on me ./ Related to heart, neurological, blood.. all come normal. my rheumatologist said that deconditioning of muscles happen because of fibromyalgia..

 

[Phoenix boy]

Hello fibrofighter,
Sorry to hear that you are suffering, life can be hard at times.
I've only recently been diagnosed with fibro at 55, prior to that I've suffered from Ankylosing Spondylitis from the age of 21. So I can empathise with regards to suffering from chronic pain & the challenges it brings.
Have you seen a specialist yet & have they offered you any type medication?
A lot of people that suffer from chronic pain would suffer with mental health issues within some point within their life, so you are not alone there. As over time it can get you down.
I just try to take every day as it comes, try to do as much as I can without suffering too much. I've found a rewarding job which helps distract me from my chronic pain. I've also just started fishing, a hobby I've always enjoyed, but packed it up back within the 80's. That's also been a boost to my mental health. I've also suffered from continuous chronic pain at different levels from the age of 21.
Hope you find some relief soon.

 

[JayCS]

I've also just started fishing

Sounds a bit like my gardening, but I use it to not have to sit, fishing would make me (my back) mad....

 

[Phoenix boy]

Sounds a bit like my gardening, but I use it to not have to sit, fishing would make me (my back) mad....

I know what you mean, I'm always standing up for a stretch, take frequent walks and I take my own comfortable chair with me. I've even bought a fishing trolly to carry everything.

 

[JayCS]

take my own comfortable chair with me.

Good you've found one!
I need various workarounds that allow me to stretch and move whilst sitting, usually on the floor.

 

[Phoenix boy]

Yes it's adaptions we have to make throughout life to make life a little easier

 

[mgallen]

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

 

[sunkacola]

That's what I am Saying. They have been doing all these tests on me ./ Related to heart, neurological, blood.. all come normal. my rheumatologist said that deconditioning of muscles happen because of fibromyalgia..

Fibromyalgia doesn't decondition muscles. If a person's muscles get into poor condition it is due to lack of use. It is tempting to be sedentary due to pain, but keeping your body moving is imperative to health and keeping yourself in good overall health will improve your life even with fibro.

 

[sunkacola]

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

Hello mgallen,

You are right that stress will exacerbate fibro symptoms. In fact, severe stress can actually create a physical problem, disease, or disorder that was not there before.

For that reason it's vital to work very hard on reducing stress in your life.
I have found that certain things are very helpful for this. Eating a healthy diet ONLY, and not ever breaking my rules about that. Getting enough sleep every night. Controlling anxiety through simple bio-feedback. Having a sense of humor and refusing to take things too seriously. Being grateful every day for what I do have. And not allowing things to get to me. Things WILL get to you sometimes, so the trick is to let them go as fast as possible, and to learn what (healthy) things help you do that. Glad to hear that the CBD oil helps you! I found it didn't do anything for me unless it was combined with THC, but I have learned how to use that without spending time being high or stoned, which I prefer not to be most of the time. Being kind to yourself is, as you know, an important key.

 

[johnsalmon]

Fibromyalgia doesn't decondition muscles.

altho you may feel pain etc in the muscle it is all happening in the cns in the brain. if the muscles are losing strength then it could be that because of the pain you are not using them as much as you normally would some simple isometric exercises would fix this. the only fibromyalgia like medical condition that causes muscle weakness is one of the MND group like ALS etc your neurologist would have tested you for this with a muscle biopsy or an muscle connectivity test