Positive IGG Antibody (ANA) - please help me!! Anyone!!

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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Scaredlin on March 26th, 2014, 6:11 pm

Xina

Hi, hope all goes well for you in April.

You and I have similar symptoms (burning and pain) particularly in the arm area.

Just want to let you know that my ortho did NOT think my symptoms were at all related to my cervical issues and I do have not only bulges but very bad cervical herniations on several levels. And spinal cord compression. According to my ortho, unless you present with numbness, tingling, weakenss, - the common ortho symptoms- probably not ortho related.

One of my neuros did bring up myofascial pain as a contender which at first I dismissed but Im beginning to think he is correct. My physical therapist believes so as well. I am so knotted up in classic myofascial areas. Mine refer from my traps to my neck muscles and up to my occipital nodes. I also have some in the ear/tongue area. If you read up on myofacial pain the pain resembles fibromyalgia, but generally from the waist up. If you read stories of fibro patients, they ALWAYS mention the burning fasica pain. I believe that is why most of my twitches are in my upper body b/c the muscles are so tight and in spasm there.

As an aside, not sure how much its worth, I just got back from a cruise where the spa staff specialized in eastern therapy massage. We put our trust in conventional medicine, but I have to tell you these women KNEW their stuff. They were able to pretty much diagnose me with one lay of their hands on me. Eastern medicine is so much more in tune with tension/stress release than we are. They gave me this musclerelease powder (by Elemis) for the bath and I combine with epsom salts and dare I say my burning is very much subsiding. GOing to my mouth and tongue but thats a whole other story.

I am also an athlete but turning my attention to yoga, massage and accupunture (will start next week). Im throwing everything at this bad boy to see what works and so far Im seeing baby step improvements. Of course I go for repeat EMG on Friday so I haven't completely abandoned conventional medicine....

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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Xina535 on March 27th, 2014, 4:51 am

Amylou29 wrote:Hi xina, just to say I have really similar symptoms to you re pain. I can how ever pin point mine to specific areas/limbs. I have a dent just above my left knee ( inner thigh ) and my whole thigh hurts, I also have a very sore right bicep for no reason what so ever, it takes very little exercise and my muscles feel like I have worked out for hours!
From what I understand this is quite common from bfs and I keep telling myself if it was the thing we're most scared of then surely my calf/ feet would have atrophied first? Who knows, I can safely say you're not alone. X


I definitely know what this is like. Why does it hurt? Why if I do simple stretching exercises like simple yoga does it feel like I just battled Rocky in the ring? I've pretty much stopped all physical activity, which is also not good. And I also keep saying, "well, then I would notice my muscles are 'less'" so guess what I've been doing - YES! I have been tape measuring my muscles and recording the centimeters and comparing on a weekly basis. I have NO IDEA if that is useful or totally useless but doing it helps me calm down when I see there are no changes. I measure my wrists, forearms, biceps, calves, knees and thighs. I sit there looking like a total junkie trying to take the tape around my bicep, holding it with my mouth, etc, just so I can get a measurement. I did it last night actually.
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Xina535 on March 27th, 2014, 5:03 am

Scaredlin wrote:Hi, hope all goes well for you in April.

- thank you, good luck to you tomorrow!

One of my neuros did bring up myofascial pain as a contender which at first I dismissed but Im beginning to think he is correct. My physical therapist believes so as well. I am so knotted up in classic myofascial areas. Mine refer from my traps to my neck muscles and up to my occipital nodes. I also have some in the ear/tongue area. If you read up on myofacial pain the pain resembles fibromyalgia, but generally from the waist up. If you read stories of fibro patients, they ALWAYS mention the burning fasica pain. I believe that is why most of my twitches are in my upper body b/c the muscles are so tight and in spasm there.

- my psychotherapist actually pointed this out to me (myofaschial pain). Sometimes it feels like it's a knot problem, sometimes it feels like my whole muscle without any knots that hurts. I plan on asking my ortho when I see him in April. He handles patients with Fibro so he can probably give me more insight. I also think, "could the twitching be because of tight muscles??" because if so then that is really a good explanation why I have twitches. My muscles are so freaking bundled up and I can't seem to make them relax. A massage is so sore, my husband has to be very gentle and then just from a small massage, my muscles will become very sore.

As an aside, not sure how much its worth, I just got back from a cruise where the spa staff specialized in eastern therapy massage. We put our trust in conventional medicine, but I have to tell you these women KNEW their stuff. They were able to pretty much diagnose me with one lay of their hands on me. Eastern medicine is so much more in tune with tension/stress release than we are. They gave me this musclerelease powder (by Elemis) for the bath and I combine with epsom salts and dare I say my burning is very much subsiding. GOing to my mouth and tongue but thats a whole other story.


- I would love to know more about this muscle release powder!! Is is something on this website?:
http://www.elemis.com/BodyCare/sportsandmusclease.aspx

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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Amylou29 on March 27th, 2014, 8:20 am

Oh my gosh I do exactly the same, I measure my thighs and calfs every week! I also do the tip toe and heel test. My muscles hurt just from throwing the stick for the dog or walking around at work, it's sooooo annoying. Do you think it seems pretty common with bfs? X
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Xina535 on March 27th, 2014, 8:30 am

I really don't know. I hear about how pain can occur with BFS (like from people who post on here and from wikipedia's explanation of BFS), but it doesn't really explain WHY? Due to muscle tension?
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby ShawnW on March 27th, 2014, 8:48 am

I do believe the muscle pain and fatigue is common amongst our group...not necessarily with BFS. Personally, I am convinced that these issues fall into two categories...Fibromyalgia-like (I suspect there are many sister somatic disorders to FM) and overuse syndromes. People wear their emotions physically. Some are more sensitive to that effect. Some people get back pain, or gastric ulcers. We get muscle pain and twitching. But, I think there is another cause for some of us...which is overuse syndromes. When you stress a system already under stress day after day...it breaks down. If you are a weight lifter, and you go through a nasty divorce...you will be more prone to injury and muscle pain. If you keep self testing while under anxiety, you are more prone to cause injury. Many of us are living in a catabolic state and wonder why we don't feel better. Stress, poor nutrition, and lack of sleep keep us in a state of break down. We can't heal. We can't get better. To turn the tide we must flip the switch and look into getting the body into an anabolic state. We do this by stress relief, good nutrition (5-6 meals a day), sleep hygiene, refraining from drugs and alcohol, and STOP self testing. You have to let your body rest.

Anyone wanting to get better...try this for 4 weeks...and if it doesn't help, tell me I'm full of it.

1) STOP self testing.
2) Eat 5-6 small meals a day, high in protein and good fats, low on processed sugars...high quality vitamin and gatorade.
3) No caffeine
4) Work on sleep hygiene
5) Relaxation is your second job...massages, vacation, dead sea salt baths, reading, funny movies, etc
6) Take a long walk every day.
7) Get hooked up in a real live support group...local...hang out.
8) If you are a spiritual person...focus on spiritual things and activities.
9) Get a new interesting hobby.
10) Last but certainly not least...get a counselor, or at least some good information about anxiety...new tools. Don't research anything (not one symptom) except anxiety.
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Xina535 on March 27th, 2014, 11:00 am

ShawnW wrote:Anyone wanting to get better...try this for 4 weeks...and if it doesn't help, tell me I'm full of it.

1) STOP self testing.
2) Eat 5-6 small meals a day, high in protein and good fats, low on processed sugars...high quality vitamin and gatorade.
3) No caffeine
4) Work on sleep hygiene
5) Relaxation is your second job...massages, vacation, dead sea salt baths, reading, funny movies, etc
6) Take a long walk every day.
7) Get hooked up in a real live support group...local...hang out.
8) If you are a spiritual person...focus on spiritual things and activities.
9) Get a new interesting hobby.
10) Last but certainly not least...get a counselor, or at least some good information about anxiety...new tools. Don't research anything (not one symptom) except anxiety.


I definitely agree that we, of all people, need to take better care of ourselves (cut out bad habits). From the above I can say that I practice #s 2, 3 (I dont like coffee), 4, 5 (progressive muscle relaxation, hypnosis, baths, massages), 6 (I walk a lot every day as I take busses to get to places - to/from the stops, though with my leg pain problem this has been limited), 10 (I have two psychotherapists).

In addition to keep up those above, I can do better with 1, 7 and 9. I am not spiritual.

Have you done with/stuck to those 10 yourself and have you seen improvements or any pitfalls (steps backwards)?
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Amylou29 on March 27th, 2014, 12:28 pm

I'm the same Xina, I work in a huge home where I run about all day, I also walk my dog a mile and a half every day ( over use ?????? ) I eat very healthy and have lots of sleep so I need to do the relaxation / spiritual part too.
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Scaredlin on March 27th, 2014, 3:24 pm

Hi everyone-
Xina- YES! Its the elemis musclease products. Its the bath packets and the muscle oil in the bright blue bottles. LOVE!

Xina and AmyLou- I echo Shawn- DONT measure and don't be afraid of exercise. Here is my take on it. I go to the gym and workout because: A) When I go there and don't feel weakness and can do about 90% of the stuff I always have - it makes me think there is no way I can have this awful disease. I read last week that Steve Gleason (Football player) couldn't do 3 pullups before he was diagnosed. So there would be a significant decrease in energy and ability. When I go and can do stuff, it reinforces positive thoughts. Yes, soreness and pain SUCKS. But its part of BFS, at least for me. B) I also workout b/c it shows me that I can maintain muscle. If you stop eating and stop working out you WILL look atrophied. I went through that phase for the first month. I looked anorexic and of course all my tendons and bones were sticking out. Then I FORCED myself back to the gym and although I have stopped lifting very heavy weights,, I still look full and developed and thus have no need to measure. STOP MEASURING!!!!!!!! Physical exercise ALWAYS a good thing in moderation and might pscyhologically help you a lot to prove you don't have weakness....

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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Xina535 on March 27th, 2014, 4:05 pm

Hi! I would love to go to the gym but orthopedic doctors orders that I don't, and instead do physiotherapy for a bit. Also my therapist does not want me to go back to the gym just yet...short story, I need to avoid a certain person who works there who made me panic, for right now. BUT! I agree with exercising, we go swimming now and then and I'm doing light yoga right now. Besides walking ;)
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Amylou29 on March 27th, 2014, 5:42 pm

Do you get painful twinges? No one seems to be able to shed any light on them, I have them in my thighs and biceps ( these are my sore areas ) but they were sore before I had the " twinges." I twitch continuously, 24/7 and all over , even my tounge goes. I also get the tremor twitches and the vibrations ones, I have been twitching non stop since June last year!
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Xina535 on March 28th, 2014, 3:54 am

I am not sure what you mean by painful twinges. Can you describe that?
I have been twitching 24/7 since July last year.
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Amylou29 on March 28th, 2014, 4:30 am

It feels like electric shocks firing, maybe like the start of cramp but doesn't actually go into one? X
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Xina535 on March 28th, 2014, 3:59 pm

I've had both feelings. I had everything happening. It got so bad I wanted to saw it off!

The electric shocks make me think you might have nerve compression somewhere. Have you had your spine scanned?

Also, not so sure about this, but it reminds me of how I felt when I was on a certain anti depressant years ago. I'd get these shock feelings in my body, but also in my brain. Thought I'd mention it if it can help any. There is no way I can remember what it was, though.
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

Postby Amylou29 on March 29th, 2014, 5:24 am

They're horrible! I've only had them a few times by they really hurt! Well I'm not on any medication so can't be that, I haven had a scan of my spine, only an MRI of the brain, thanks for your help though. X
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Re: Positive IGG Antibody (ANA) - please help me!! Anyone!!

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