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Burning sensation
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An_253299 posted:
I have a burning sensation on my upper body. Every time I pick up my 19 month old grandson, .the pain is unbearable. I have also l lost a lot of muscle mass. I guess I should get an EMG. I dread it. I also have osteoarthritis...due to being on Dilantin for 35 years. My doctor never warned me about this. She said it could lead to osteoporosis. I figured I would exercise to keep my bones strong. Now I can't exercise...it makes the joints worse! Im not fond of my doctor anymore! I sweat profusely. It hurts to remember when my dad passed away. The bed sheets were always soaked. That's going to be me! I'm petrified to die because of that. Plus I don't want my husband to have to take care of me. I'm trying to keep a positive attitude...yet, constantly thinking of suicide. I wish I had a family that understood. They all think I'm nuts. Oh well...guess life goes on.
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dollbug responded:
Hello and welcome.....You are not*nuts*....regardless of what anyone thinks. Most family members do NOT understand the pain that another person goes through. Only those of us who actually have it know what it is like. And yes, life does go on. You should indeed just try to find something that will work for you....as I am sure there are things that will indeed help. It does take a trial and error process....which does take time and effort.

Perhaps your grandson is too much for you to be picking up. You should probably just sit down and let him sit with you. I also think that FM does affect our strength. I know that something has made a BIG difference in mine.

You do not say how old you are....but I do want to tell you that when I first got sick I also sweated a lot. The first summer was my worse. This does get better. I do not know if it was a menopause issue or something else....since I had a hysterectomy many years before all of this started. I have no idea. Soon after this though I found out that I had FM.

Having a positive attitude is a good thing. I am sure that your family would hate to lose you to an early death. How sad that you think about this. I do know that pain causes people to do *stupid* things....but you should try to speak to your doctor about what you can try to feel better.

Sometimes I think that doctors do NOT know what certain medications may or may not do to us when taking them long term. Perhaps you should see if there is something else you can change to.

Have you tried doing some Gentle stretches and/or exercises each day. Do you take any vitamins and supplements?

I hope you will check out the info here under *tips* and *resources*....and be sure and read the *member toolbox* which will provide you with some good *tools* that perhaps might help you cope better.

Take care.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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bette_kaffitz responded:
Oh, An,

You are NOT your father. Yes you have medical problems, but that does not mean you are getting ready to die. You may just wish you were dead on a really bad day!

All kidding aside, only you know what you can do on any given day. My rule of thumb is that if it really hurts I shouldn't be doing it. Think vacuuming. One big no-no. And that may be true for lifting that treasured grandson too. Your lap will still be there for reading and cuddling, you just won't be a forklift any more.

About these sweats. You're far from alone. I have a hard time of it when my house gets above 72 degrees now! (I hurt when it goes below 69, though.) I think our regulatory signals are all messed up. And then again, you may be hormonal as you are in the years around menopause. (But a 90 women I did aquatics with said she still got hot flashes!)

If you are unhappy with your doctor, there is probably a reason for this discontent. While you still have him to fall back on, check out other docs in your area. Sometimes older docs get stuck in their ways and may not be "up" on the treatment of fibromyalgia or of your arthritis. Some keep amazingly current. Some don't.

Stick with us. We are always here to share the good days and the bad ones. And there is probably no sign or symptom that somebody out here hasn't experienced.

BetteK
 
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missist replied to bette_kaffitz's response:
Hi, well if you are crazy-- you're not alone.
I am in my 50s and often think about my folks--as they both passed away fairly young. I do have some of the same issues my Mom had--and I really didn't understand what was going on with her when she was failing--before she died rather suddenly-- cardiac.

It is not too hard to understand that a daughter might fear the same thing happening to her that she watched happen to her Mom--but truth is--as Bette said-- you are not your mom. I remember i was pretty shocked when my Dr told me I may not need to take my blood pressure pill anymore. My mom took 3 pills for that. Apparently-- I am different. Yes I have it--but no it is not as bad as hers. Also diet and exercise and learning to de-stress and getting meds that are useful.. etc.. all these things do help.

Still-- I too have days when I feel just the way you talk about there-- but that stress level generally means I need to think about what is going through my mind, maybe pray about it-- and find things that are better to dwell on--or maybe just get some sleep.

Fears like that can be very persistent-- but they are beatable. you just need to knock them out for the lies that they are. You don't know when you will die or of what. Only God knows that. Don't listen to the thoughts that do that-- what good is it? Its there to just stop you and paralyze you.
Don't believe it. Peace to you!
Mary
 
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missist replied to missist's response:
One other thing-I have osteo arthritis too--but never took that drug. It happens. For those of us with fibro-- we tend to feel pain a lot more than we should--so although most people eventually do get some osteoarthritis-- we feel it so much worse than other people that we can think it is worse than it actually is. I was shocked when my xrays showed much of mine is mild. (some not mild) I thought it felt a lot worse than that. Just fyi-- the fibro itself can exhaust you, make you think and feel less healthy than you are.
 
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painfullyexhausted responded:
I'm sure I will repeat what has been said before but only because it's the truth. We have all been where you are mentally, emotionally and physically. It's easy to fall into that slump and much more difficult to climb out. Everyone says that you should exercise, stretch, eat the right foods and get rest. This seems impossible to do when you hurt, can't sleep and feel like the world is caving in. I would get so angry when people would say that because I already knew what I was "suppose" to do and I felt powerless, out of control of my own body and mind. What I've found that helps me is to think of how my life could be so much worse than just having this stupid thing call FM. For example; my mother in law, that is in her early 50's, has been battling cancer for almost 3 years now. Fighting for her life, good news, bad news, chemo and radiation. New tumors and more surgeries, it's endless. But what gets me is that she is fighting so hard for her life and I'm so selfish by wanting to end mine. When you put things in perspective and compare what you have to someone that would love to say "I have fibromyalgia" instead of "I'm battling cancer" it makes you look at things differently. I'm not saying that dealing with this day in and day out is an easy task, because I know it's not, I'm just saying it could be far worse. I'm not judging you either because I've also said that I wish I could just end all of it. It's so depressing and no one can comprehend what we go through unless they've been there. People can't see your pain so it's easy for them to dismiss it. I know your not crazy, it's real. It's unfortunate that your family isn't more supportive but I do know that everyone here is. All of us know how you feel and what your going through so please talk or vent here. There's years of experience right here to help guid you. I don't write very often (I tend to ramble on) but I do read a lot of what people are saying and have learned so much. I do hope that you feel better soon, don't let this beat you. It's a struggle to stay afloat, you'll have good days and bad days but remember it could be worse.
 
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missist replied to painfullyexhausted's response:
What she said. I too struggle against death wishes, sometimes. Its a frustrating thing going on with this chronic mess. For instance yesterday I pushed through and got a goal accomplished and was so happy--cuz I thought I could pick up where I left off today and finish a few things up for my shop--and by golly--I'm in a good enough mood I guess but I'm so exhausted. Didn't help that I was up at 3 am babysitting hubby's boat cuz it had just rained a huge huge amount and I was afraid it would be full of water since he left the pump in a state where I need to go out and turn it on every time it needs to be pumped.

So I worried about that. LOL. yay!

I have some wonderful things going on--but when I lose my strength--I lose my peace of mind too. They are married apparently.

Again--Peace be to you! There are good days, and sometimes more good ones than bad.
 
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bette_kaffitz replied to missist's response:
To all of us, For all of us,

One of the saddest things about FM is how many of us wind up acting on those suicidal thoughts. It is a dirty little secret that most docs will not tell you.

The saddest part is that for most of us a few bad days or even weeks are followed by some better days. If we would just wait and see what life has in store, we would find hope.

That's why this post is so important for all of us. Even when we cannot step back and see the cyclic nature of OUR FM. we can remember how one of our FM family has come out to a better place. We prop each other up on the bad days and bring joy on the good days. We remind each other that even the worst FM day has it's moments of light, peace, or humor.

Both my parents survived heart attacks in their 30's. It has made me vigilant about B.P. and cholesterol, but here I am at 70 with a heart that is "30 years younger than your spine." as my nurse practicioner (that dear, practical person) puts it. We can dwell on family history, or we can live our own lives. And our lives count.

My heartfelt prayer is that some of my posts can help another member through a bad day. Then my day--good or bad--will have been worthwhile and purposeful.

Towards better days for all of us,

BetteK
 
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franr replied to bette_kaffitz's response:
Hi Bette
Very good advice.Severe pain can be so unbeareable at times and we all go through this depressing times. But as you said we have very bad days and then some very good days.We need to wait it out.I hope An takes your advice .Every day is different and we don't know when the other shoe will drop. I recently went to ER for divitulitis and was so painful but having had this before I knew what to expect. Hopefully this will not lead up to another flare up.One never knows what to expect or when. Dear An please stand strong we are all pulling for you , Hugs....Fran
 
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moxie1956 replied to painfullyexhausted's response:
Well said, Painfully Exhausted!

I, too, share your perspective, recognizing that no one has ever died of fibromyalgia, or chronic myofacial pain, or chronic migraine. Moreover, as you so aptly pointed out, we do not "battle" a deadly disease. (Oh, but we do battle!)

On bad days, I consider the possibility of suicide. To me, it is always an option, the very last one on a whole continuum of options. I don't want to jinx myself, but I think I finally know I won't kill myself because it is such a dastardly act. However, the reason it remains on the line is because I've had previous suicide attempts. Should I point out they were both unsuccessful? Just a little bit of levity...

On good days, I swing to the opposite of the continuum, imagining I can just take up where I left off before I became ill. I'm going to tackle long-neglected household chores; I'm going to complete projects that should have been completed 2 years ago; I'm going to tutor young students in their grammar studies; I'm going to manage the 2 libraries (1 as a general collection for our church, the other for homeschool families) I've yet to complete; I'm going to...keep on dreaming and hoping.

On those good days, I typically accomplish 1, maybe 2 household tasks. I usually run my errands. I might even make it to the YMCA for warm water pool therapy. Inevitably, when all of that is accomplished, I return home exhausted and pain flares. Nonetheless, there is no denying, those are good days!

They are especially good days if I begin with a meditative reading in Psalms; listening to soothing music periodically throughout; and doing something, anything for someone else, even if it's unseen prayer---it is something worthwhile.

To An_253299: I celebrate that you are alive! I am so glad you chimed in here with us because we truly, actually do understand what you are going through, no matter how "nuts" it may seem, we have been there and done that!

I get so agitated when I watch YouTube videos telling me certain exercises are designed especially for fibro relief. I cannot do any of those and it infuriates me that the instructor speaks as if I can, if only I would try. Surely there must be some kind of exercise that will not put me in 8 out of 10 pain for the next 48 hours, I hear for some, it's yoga. For me, I have to be in the warm water pool, even if it's just to suspend my body hanging from a noodle, and dangling my legs to and fro.

Your headline grabbed my attention, An_253299, because I frequently get surface 'sunburn' pain all over my body, front and back. Sometimes, there is accompanying deep muscle throbbing, aching pain, like in my thigh or in my upper arm, or my hands just hurt. If I understand the doctor correctly, this is not fibromyalgia but chronic myofacial pain. So what? It still renders me useless! Except for you, I've not heard anyone describe this burning sensation. Just another one of our issues, I guess.

There is a psalm saying you are in the palm of God's hand. He's got you, An_253299! You are created in His image, and He doesn't make junk. Your loved ones would never get over their gaping hole loss if you were to kill yourself. (Somehow, we sanitize the lethal action by saying 'commit suicide' but it is an act of killing one's self.) Just think of your grandson. He won't so much care about you not being able to lift him as he cares about you being there for him, to the best of your ability.

As has already been said, you are not your father. My mother, 4 out of her 5 siblings, and her father all died of colon cancer. Imagine my presumptuous fear! Genetic test results show I do not have the marker at all! That doesn't mean I can't get colon cancer, but it does mean getting it is not a foregone conclusion.

Live, An_253299! Breathe deeply. Be kind to yourself. Take mini vacations, even if it's just 15 minutes of solitude. And, remain here with us. We'd love to hear from you again"665
Featherlight Hugs,
Moxie
 
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missist replied to moxie1956's response:
In keeping with what Moxie shared.. I thought I'd show y'all this cross I made from my etsy shop.. This is a little bird in a nest--but the nest is made of thorny twigs--she thinks she is in a scarey dark brambly forest--but in truth she in a sweet little protected nest in God's hand and he is looking fondly down on her. On the back I wrote "I've got you".

Anyhow it is the way I have understood my situation for years. I think I was just a few years into this when I had that thought/revelation. Its been 30 now. I'm still up and down and frustrated a lot--I have heard that about 25% of folks with fibro do commit suicide-- but no matter how tempting that thought can be at times--I know I'll never be one of those. There's that bit of Faith that I have that God knows all about this mess and has his hand on me--and suffered worse for me.

So anyhow thought I'd share it--here's the link: https://www.etsy.com/listing/158985907/ready-to-ship-wooden-gift-cross-with?ref=shop_home_active
 
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thenikki64 responded:
Please read and hear what everyone has said. We have been there. I remember standing in the surgery room of my veterinary office, crying on the phone to the PA, telling him if this was as good as it would get, I was ready to leave this life for whatever might be next. That is when I was introduced to Botox, which paralyzes the muscles in my neck and upper back that would rather be in rigor. I no longer have those injections because I have found a combination of massage therapy, acupuncture, supplements, muscle relaxers and pain medication that keep me going without putting a poison in my system. It takes time and some foot work and trial and error and as much patience as an army but you can find some therapy that will work for you. My family does not understand, but I am blessed with a husband who would pamper me to no end if I would let him, but the more I do, the more I CAN do. Take time for yourself. Rest when you need to. This site is a wealth of information, and most folks have to wade through it on their own to find what they will try first. Don't ever give up. Ever. We are always here to listen and advise if you so desire. It is worth it, so hang in there. Pam in Savannah, GA


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