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fibro ?
Regular Member


Date Joined Nov 2009
Total Posts : 76
   Posted 11/11/2009 9:33 AM (GMT -7)   
After seeing the (newest) Neuro,, and after looking over the biopsy results that showed neuropathy in hte lower legs also gave me a DX of fibro,, I guess my question is this,, do some of you have severe arm pain, fingers that seem to be cold and useless,, Mine seems to be a problem of touching anything cold,, the severe fatigue,, and also have a DX of sjygrons,, yes still dont show the antibodies,, my panic level is shy high,, its just teh constant pain,, which seems to increase daily,, chores seem to just wipe me out and yes,, like a lot of you i was labeled,,, you know the label,, your bloodwork is fine, so it must be in your head,,, only thing thats out of whack is my protein level,, its a bit low,,,,... esonophils is high,, constant sinus infections,, and still trying to work with all this,, they are going to try some IVIG for the neuropathy,, and hope it relieves some of the symptoms,, its just teh constant pain,, and when i wake up in the moring,, the pain starts all over,, I dont know how you people deal with it

puppylover
Veteran Member


Date Joined Feb 2009
Total Posts : 824
   Posted 11/11/2009 9:56 AM (GMT -7)   
Welcome fibro?guy.  Sorry you have so much going on right now.  This forum is wonderful, so many caring people who have lots of compassion and support.  I can't really help you much except when you mention the hand problem when you touch cold.  I have Renaud's and others on the forum have it.  Do your hands turn white, red, and then bluish when they get cold.  That's what my hands do and they either hurt like heck or go numb and tingly.  Does your doctor know about this symptom?  If not I would mention t.
 
I'm sure others will be along soon and maybe you'll get more info.
Puppylover
 
Fibromyalgia, arthritis in spine and hips, IBS, Raynaud's syndrome, hypertension
 
On the eighth day God created Golden Retrievers.


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40596
   Posted 11/11/2009 10:51 AM (GMT -7)   
Hi Fibro?,

I just wanted to welcome you to the forum. Not sure if you have been welcomed yet or not. Just coming on the forum this morning (afternoon).

I hope that you have been directed to fibro101, it is the first thread on the forum. There is a wealth of information there.

I am sure that you feel outnumbered with all of us women, but please don't. Know that we are all here for you. This is a wonderful forum, and we have a lot of fun.

Take care, have a good day.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 11/11/2009 12:16 PM (GMT -7)   
Hi, and welcome!  I"m so sorry you are dealing with this.  Fibro is not fun but you can learn to live a full and enjoyable life in spite of it.  When you are first diagnosed it is horrible.  You don't know what to do or how to handle this.  It's especially bad is you are working.  But, you will find what works best for you to control the pain and then you can move on with your life.
 
As Karen mentioned, be sure to check out the Fibro 101 thread...the first thread on the forum.  There are links to good information about fibromyalgia and you will learn a lot.  The more you learn about fibro, the better you will be able to handle it.  That's the key!
 
I use ibuprofen with food, extra strength Tylenol, malic acid/magnesium, and vitamin D3 for my pain and fatigue.  There are links in Fibro 101 about the malic acid and the vitamin D.  Many with fibro are deficient in these vitamins and nutrients.
 
You do need to keep moving with fibro.  The more you sit and lay, the stiffer you will become.  Gentle stretching exercises and gentle exercises do help and help keep your muscles more flexible.  Also, they do help with the pain.  There are some good stretching exercises in Fibro 101 that can be done sitting down.  So, if you have a desk job, these will be great for you.  My gentle form of exercise is walking.  It is very good for fibro.  Also, swimming is wonderful for fibro if you have access to a pool.
 
Moist heat feels wonderful on the muscles.  Hot showers and baths are great.  Also, you can get a Bed Buddy.  They sell these at Walgreen's and other places.  You also could make  your own.  Take a tube sock, fill it 2/3's full of long grain rice (not instant) and tie a knot at the end.  Pop it in the microwave and it gives off moist heat.
 
Try keeping a positive outlook, too.  I know that sounds impossible to you right now, but you do have a wonderful future ahead of you and a positive outlook does help  you feel better.  Looking negatively at things just makes you feel worse and it doesn't help the people around you, either!  You will find what works best for you.  Stick with us and you will get plenty of ideas!
 
I'm so glad you found us and joined in.  Don't hesitate to ask questions because we are here to help you.  I'm looking forward to getting to know you.  Hope to hear more from you soon.
 
Sherrine 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


WhiteChocChip
Regular Member


Date Joined Jun 2009
Total Posts : 439
   Posted 11/11/2009 1:09 PM (GMT -7)   
yep ... my feet go to sleep like it's going out of style.

cat8201
Regular Member


Date Joined Nov 2009
Total Posts : 135
   Posted 11/11/2009 5:13 PM (GMT -7)   
I have neuropathy in my arms & legs. The severity ranges from days where it is just annoying & tingly to days where I feel like I have needles of fire, especially in my feet, and I cannot stand on them.

I got shingles about a year ago and it seems to be a lot worse since having those.

Lyrica actually helps a lot for the neuropathy but I do not take it daily.
27 yrs old-Fibromyalgia; PCOS; Surgery induced Menopause; Classic Migraines with Aura; Neuropathy; Ankylosing Spondylitis w/ narrowing around the spinal cord; Spinal Stenosis of the Cervical & Lumbar Spine; other little things
 
Medications for pain: Oxycontin; Soma **will update when change meds for sleep, etc.
 
Other treatment: Aquatic Therapy (still have to start); Sleep Study (need a sitter)


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 11/11/2009 5:35 PM (GMT -7)   
Hi fibro? The sensitiviy to be cold in your fingers may be Raynauds. If it is, it can be treated
with a calcium channel blocker such as Diltiazem. I find it really helps.

The others have given you great advice. I'm glad you have joined our fibro family!

Keep posting, we care!

Robin


MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


fibro ?
Regular Member


Date Joined Nov 2009
Total Posts : 76
   Posted 11/12/2009 9:33 AM (GMT -7)   
Its just hard which doctor to believe,, the sensations seem all out of proportion to the enviroment,, the burning sensations touching anything cold,, No,, I dont have reynauds,, my fingers stay warm pretty much,, I notice that the colder it gets the more miserable I am,, I just hate the arm burning and twitching of the muscles in hte arms and hands,, it just seems to be getting wrose,, and I;m not so sure of the fibro DX,, if it is,, its a miserable way to live, I just hate it

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 11/12/2009 10:50 AM (GMT -7)   
Fibro?, Many of us feel worse when the weather becomes cold, damp or rainy. I have always
described fibro pain as allover bone crushing pain, especially when I am flaring. Fatigue is
almost constant.

There are things that help. I take Flexeril (cyclobenzaprine) a muscle relaxer when I'm
flaring and use heat. I also do deep breathing exercises, stress is horrible for fibro. The
adrenal glands will pump out adrenaline and cortisol into our blood stream and that decreases
blood flow to our muscles, as a result our mucscles tighten and cause pain.

An episode of raynauds can happen in 100 degree temps caused by stress. If your fingers
aren't turning colors, it is unlikely that you have Raynauds.

Believe it or not, you do learn to live with the pain, The pain level waxes and wanes,
there are good days and bad. Through trial and error you will find what works for you.
Fibro is frustrating, I went through a grieving process and mourned the loss of my old life.
After sometime you do find acceptance and learn that you can still be happy and enjoy life.

I am sorry you are going thrugh this. There are days when feel I can't cope and the next
day I am feeling better emotionally and can deal better with things.

For my fibro I take Savella daily and Flexeril when needed. Ask your doctor what you
can take to help you.
 
You mentioned you have Sjogern's Disease. That is an autoimmune disease and
not everyone produces a positive ANA. Your doctor should continue to test on a routine
basis. Sjogerns is sometimes associated with the other connective tissue diseases
such as Lupus, Scleroderma, Polymyositis and RA. Antibodies can wax and wane and
that is why routine bloodwork like ELISA 8 is good.
 
I have MCTD ( lupus, scleroderma and RA) but I never had a positive ANA, I have tested
high for RNP multiple times and it is the antibody for Mixed Connective Tissue Disease.

Keep posting, We do care, we have been through it and do feel your pain.

Hugs

Robin


MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 

Post Edited (crazykitty) : 11/12/2009 11:28:08 AM (GMT-7)


fibro ?
Regular Member


Date Joined Nov 2009
Total Posts : 76
   Posted 11/12/2009 12:23 PM (GMT -7)   
Thank you for your replys,,Last Friday I saw my rheummy,, and he did a ton of bloodwork, Sed rate,, CBC,, metabolic panel, and of course looked again for the sjygrons antibodies, so far only thing abnormal is a low protein level, in two years I have had 5 sinus surgerys,, a Chiari Malformation surgery, had a sural nerve biopsy, which did not show anything but left me with aleft side of my left foot numb,, and a ppunch biopsy on the lower leg that finnaly showed Periphal Neuropathy, The chiari surgery landed me back in the hospital 2 weeks later with menigitis, and spinal fluid leaking out of my neck,, so another surgery had to be done
I am sitting at my desk at work,, I am a electrician,, counting the minutes till I can go home,, but wondering how I can do it all again tomorrow
The neuro I saw on Tuesday was the one who DXed mme with Fibro,, like I said,, who can I trust anymore when you feel so horrible,, My family isnt much support,, I am seen as teh breadwinner,, and was told this morning,, I wish you didnt have to work,, but you do,, its so depressing,,
The neuro I saw wants to try a 5 day course of IVIG treatments to see if it helps the neuropathy,, and the rheummy wants to try rituxim,, I;m not crazy about taking a chemo drug,, since it seems my immune system is pretty whacked now anyway,, I was able to get the H1N1 vaccine here at work today
The fog is horrible, I never seem to know what day it is,, let al one the month,, seems I just saw labor day go by,, blew past halloween and Christmas seems like a horrible nightmare looming on the horizon,
For alost three years we have chased down a DX of something,, and so far all we have is a definate Periphal Neuropathy,, and a maybe Fibro,, we had to go to Pittsburgh to even get that far,, our local doctors finnaly gave up and labeled me a nut case and invited me to a psych ward for a little while,,, I am depressed,, who wouldnt be,,,, the added stress of just living from pain filled day to the next,, with no relief in sight,, and trying to work is kill ing me,, sorry this is so lo ng,, just had to get some things off my chest

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 11/12/2009 3:00 PM (GMT -7)   
It is good that you are venting! Sometimes it just feels GOOD to just let it out!.

You have alot going on and it is easy to see that anybody would be stressed under the
circumstances. I have also felt like that, sometimes it just feels like piling on. The Savella
I am taking gives me a serotonin boost. Are you on any meds? You need some relief!
 
You mention you might try IV immunosuppressant therapy. I am on Methotrexate, a
chemo immunosupressant. It is supposed to slow down the progression of my MCTD.
I was nervous at first about being immunosuppressed but thought taking it was worth
the risk.

 
Are you going to be put in Neurontin for the peripheral neuropathy? It really helped my
brother.
Keep us posted

Robin


MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 

Post Edited (crazykitty) : 11/12/2009 3:12:46 PM (GMT-7)

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