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hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 39
   Posted 10/20/2017 8:47 PM (GMT -7)   
Good evening everyone, hoping this post finds you doing well.
I have some questions about symptoms I deal with now and again.
It is hard to sort everything as like many I have lots going on.
But I do have a great rheumy and she has told me several times in the past couple years that the symptoms seem to her more to be about fibromyalgia not lupus.

It makes sense as I have lived with lupus for many years and these symptoms are different, and I have never been taken down before the way I am now.
So I will try gather some insight and then go back to my doctors for clearer answers.

My rheumy had told me I had fibro years ago, but the symptoms were
always just painful pressure points and stiffness especially in the morning. Although not much fun it never stopped me, I could get relief from my own tool box. Heat packs, cold packs, regular Tylenol and rest.

But life has been very difficult the past four years of my life, with too much grief, too much stress, to much work.
I believe I am paying the price now with much more difficult symptoms.

One I want to ask about is about heat. Terrible burning heat.
And I don’ understand what it is or where it comes from or why.

My body gets on fire deep inside. It comes on out of nowhere.
Sometimes it comes on from doing to much, like those times when life gets away from you and it feels like you are on a treadmill you can’t get off. Another thing that can bring it on is having to stand or sit too long, like waiting in a line up or sitting waiting for an appointment.
The hot sun can do it too. And blue light.

Finally and maybe the worst is going to bed and laying down, even if I have fallen asleep it can wake me right up.
What happens is that my spine seems to heat up, very deep inside and like a furnace that has been cranked way up. It goes right up into my neck and into my head. My hands and feet get affected too, very hot and burning.

Then my soft tissue can start, not as deep more on the surface, to heat up and eventually just ridiculous pain and stiffness starts everywhere.
From the slightest touch.
Usually my cervical spine starts to hurt way up where my head meets my spine, then the headaches come. They are fierce. My vision is affected, kind of blurred off and on. My balance changes kind of dizzy and spacey and cognitive issues start. Memory loss, word loss, multi tasking goes out the window. That’s when I disappear. I am not myself anymore. But I know I’m not gone I will just be lost for a time.

There seems to be a kind of shortness of breath feeling in my chest, that comes when the heat comes and travels from my lower back up my spine and I can feeli it in my chest too.

This can suddenly just happen, I’m feeling fine then suddenly just terrible heat and then all the rest and I’m a mess.

Well I hope I have described this in some kind of order that is understandable and I don’t sound like a nut.
I don’t know how else to describe it...... maybe a traveling, prickly electrical shock? It can make me tingle and kind of itchy too.

Thanks for listening, tuffymason

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17501
   Posted 10/21/2017 5:53 AM (GMT -7)   
Tuffy, quite a few members do get the heat but I'm not sure if it is as severe as you described. I get hot spots and cold spots and also wet spots. Feel like water is running down my leg or that a bug is crawling on me. Of course there is nothing...just nerve involvement. Since it happens when you lie down, try changing your position. I cannot lay flat on my back and can only lay on my left side for a few minutes. So I lay partially on my right side with a pillow behind my back so I don't end up flat on my back in the middle of the night. I have to have my legs bent also. Then, I'm comfortable. You might have some nerves being pinched when lying down that is causing this extreme heat.

Feel each side of the base of you skull, where your skull meets the spine. Do you feel a couple of knots? I had two knots, one on each side, that were the size of marbles. If so, these cause a lot of neck and head pain. They are Trigger points. I pressed as hard as I could (they are tender) and then I massaged them and repeated this. I did this several times a day and before long the knots disappeared and so did my neck and head pain.

Trigger points can be found throughout the body. I bought The Trigger Point Therapy Workbook on Amazon and it has diagrams showing where to look for Trigger points that are causing some of the pain you are having. You use the same technique that I explained for the skull Trigger points. I was able to fix my frozen shoulder this way!

I get the tingling and bizzing. It's not often but it happens. I have an Apple Watch and it buzzes your arm if you are getting a text message. Well, my arm will buzz and there is no text message coming through. That's fibro.

Stress really affects fibro. You have mentioned you have been through a lot of stress and that's producing more symptoms. I went through a horrible time years ago. My husband died suddenly at only 51 years old and 17 days later my mother had a brainstem stroke. We were in the process of relocating when this happend and our home up north had been sold. So here I was with no husband, no home, and my Mom in intensive care. I moved and didn't know a soul or even how to get around the area. Tuffy, the pain hit me between the eyes and my cognitive memory went down the rat hole. I had conversations, I was told, that I still don't have memory of having! It was a horrible time in my life. Then I was in church one Sunday and the message was on fear. I realized fear was causing a lot of my pain. The scripture used can be found in my signature below. I put it there because it has helped me so much throughout the years and helps me relax instead of worry.

Your shortness of breath can be from anxiety. Many of us suffer with anxiety because of this illness and we aren't sure what is happening to us...and neither do our doctors. Anxiety, again, is fear so I turn to that scripture again. It really helps me.

I keep a positive attitude and that can help me almost as much as medication. You seem to have a good attitude too. In Fibro 101 there is a good link about how to maintain a positive attitude when you have chronic pain. It's very good and I go back to it when I'm having one of those bad days.

I hope this helps you some. I'm sure others will pop on with their suggestions too. We are all so different.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2069
   Posted 10/21/2017 8:51 AM (GMT -7)   
Ok, i am familiar with areas of heat..but nothing like you are describing..

Hot flashes are not involved?

Because we are so sensitive , hot flashes were bad for me..i would wake up so hot..and get ice packs and bring them back to bed so i could cool off enough to go back to sleep.but for me that was because i am so sensitive i experience heat or pain, itching in a more extreme way...

Thats the central nervous system in overdrive..

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17501
   Posted 10/21/2017 2:56 PM (GMT -7)   
Great suggestion LJM! My hot flashes weren't really bad and I also lived up in the frozen north. Most of the year I only had to step outside for a few minutes and that took care of the hot flash. 😂

I hope this could be Tuffy's problem. It's something that eventually goes away.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 39
   Posted 10/21/2017 3:51 PM (GMT -7)   
Hi there, you know I think it is my CNS.
In 2003 I was hi from behind at a red light and messed up my neck pretty bad. The did an MRI and saw that there was something that did a kind of jont around the vertebrae instead of running along side. Not sure but they seemed to think it could be part of the issue.

Can’t be hot flashes as that ended 25 years ago because of the Addison’s.

I think it is for sure aggravated nerves due to inflammation.
The Meloxicam, Baclofen combo seems to work well. I can live and think again. It’s still there but I can pretty easily get on with things and sleep. But I know I have to be careful.
I do use cold packs too. I sleep with them lots and they do work very well.

My rheumy did an X-ray of my spine so I should hear back from her next week. I will ask her now that things have settled some-what if I need to do further investigation.

As for anxiety, it is directly related to the severity of the pain and length of the flare up. But Isometimes think it’s more of a physical
thing, as I don’t have it otherwise. Maybe frustration?

So very sorry to hear of what you went through Sherrie, sounds like it was just a terrible time. Sometimes all you can do is let go and let God, have faith and just keep putting one foot in front of the other.
I hope things are better presently.
Thanks, tuffymason

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2069
   Posted 10/22/2017 12:28 PM (GMT -7)   
Also, magnesium, and malic acid supplements, help our muscles
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