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greyhounds mom
Regular Member


Date Joined Sep 2009
Total Posts : 24
   Posted 10/3/2009 3:02 PM (GMT -7)   
Hi Everyone I have been reading your forum for weeks now and finally decided to join and share with all of you.  I have fibro. I was diagnosed 2 years ago. Before then the doctor's did not know exactly what was wrong with me. They thought I had myasyenia. It is an autoimmune disease. I had a chest tumor 20 years ago removed.  They had to do open heart surgery to get it. This disease usually follows with the tumor I had but it kept coming back negitive. They could not figure out why. They were so sure I had this disease.  After lots of tests and different medicines and 4 different doctors, the last doctor I went to figured it out. He put me on effexor and so far it has worked for me. I also do lots of hot baths at night. I do have to say the pain can be unbearable at times, especially when it is raining and damp out.My daughter is 39 years old and just found out she has it to. So we sit down at times and complain about our pain and then she will go and exercise and I will go and walk the dogs and make it through another day. Some days are good and some are very sore but we will be okay. I love reading the forums. It helps me understand different ways  to deal with the pain when nothing else works.  Thanks for listening. 
greyhounds mom 


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 10/3/2009 4:15 PM (GMT -7)   
Hi greyhounds mom, glad you have joined us. If you haven't already make sure you check
out the fibro 101 thread, lots of good info.

I am sorry you went through so much to get a diagnosis. From being on the forum, I have
learned that it takes a long time for alot of people to get diagnosed, myself included. Im
glad that you have found a med that works for you. Sorry to hear your daughter has
fibro too. Hope she is finding pain relief.

We have something in common, I like doing the hot baths and walk for exercise; it really
does help.
Come back and join us often!

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


springfling
Veteran Member


Date Joined Mar 2008
Total Posts : 519
   Posted 10/3/2009 6:28 PM (GMT -7)   

Welcome to the forum. I have also found it to be a great place to get ideas & advice on working with my pain. So sorry your daughter has Fibro also. I have 2 sisters that were diagnosed after I was, so I believe that it can run in families! My father had pain all of his life and the doctors always blamed it on arthritis and old age, but now my sisters & I feel that he must have had Fibro too. Back then it was probably never even thought of!

I hate the bad days, but the good days keep me going. I have recently started trying to do mild exercise to help with some of my pain. At the moment I am hurting too bad to do anything, but will pick up where I left off when I start feeling better.

I hope you start having more good days then bad!                 Hugs,

                                                                                                        Springfling

                                                                            


Never regret something that made you smile!                                   

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Fibromyalgia*Osteoarthritis*Sleep Apnea*RLS*Menopause* Allergy/Sinus*Spurs on Spine

Post Edited (springfling) : 10/3/2009 7:49:58 PM (GMT-6)


nomadicmom
Regular Member


Date Joined Sep 2009
Total Posts : 41
   Posted 10/3/2009 6:47 PM (GMT -7)   
do you have greyhounds?? I have a sighthound as well, an Afghan Hound. I got Lucy one month before I got sick. She is such a comfort to me. I always wanted an afghan and for my 10 year anniversary, I got one! She is black with a white patch on her chest, just like the first afghan I ever saw in Westminister that made me fall deeply inlove with the breed. She's everything I ever wanted in an afghan and I would be devastated if I lost her!!!! I live in an apt, so she has to be walked. Sooo many days I wake up and DO NOT want to go outside or even get up. But Lucy must go outside! I take her out and I instantly feel better. It soo helps to get moving!!!

I also experiance such horrible pain. I can deal with everything else, even the fatigue, but the pain gets me most. I am new here as well and new to the disease. Look forward to hearng more from you!

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 10/3/2009 8:01 PM (GMT -7)   
Hi GM!!

And welcome to the family...even though you've actually been part of the gang for a while. ;-) Yep, this is a wonderful place to turn on your "Feel Better" button for the day. Without the folks here I would be absolutely alone with the pain and suffering and not have a clue what was actually going on. I have learn the technical parts of fibro as well as ideas and tips on how to not just survive but to enjoy a wonderful life...albeit it different.

Come join our daily Koffee Klatches. We do get silly some days but it's a small bit of time where we can talk about anything but the "P" word (pain...ssshhhh)..lol Also on Thursday evenings we have a fun chat time in the Chronic Pain chat room. This last week the forum had a giant crash so we missed our chat but we will be there this week. If you've never tried chat rooms come on anyway and we'll show you how. It's fun and easy.

I'm also sorry to hear your daughter has become hit with this unfair disorder. But is you two must suffer at least you can hold on to each other for support and love. What a precious daughter you must have and how great that she's close to you. My daughter is almost 36 and so far I don't see any signs and I pray none of my kids inherit it. My biological mother and one brother likely had/have it so I guess I was destines.

OK, enough babbling. Hope to see you in chat and feel free to email if you ever need/want to.
Chutzie
Play fair. Don't hit people. Say you're sorry when you hurt somebody.
~Robert Fulghum

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums
(/|\)


greyhounds mom
Regular Member


Date Joined Sep 2009
Total Posts : 24
   Posted 10/5/2009 9:32 AM (GMT -7)   
I am so glad that there is a forum for this disease. I do have a question about the symptoms. I can get pretty stressed out at times. Can that bring on a flare up? My husband was very sick this summer and we almost lost him. Thank God he came through and everything is okay for now. He will need surgery next winter but we think he will be okay.
greyhounds mom 


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 10/5/2009 10:07 AM (GMT -7)   
Stress can definately bring on flares. Our nervous system goes into overdrive when we
are stressed out. The adrenal gland pumps out adrenaline and cortisol into our bloodstream
with the end result of decreased blood flow to our muscles. Our muscles then tighten and
cause pain.

I am so glad that your husband is now ok, hoping his surgery this winter will be sucsessful.
You must feel so relieved that he came through such a frightening ordeal, what a stressful
time for you both. I am so sorry, hoping great things ahead for both of you.

Try find something that helps relieve your stress. Exercise helps me alot , I like to walk.

Hugs

Robin


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


greyhounds mom
Regular Member


Date Joined Sep 2009
Total Posts : 24
   Posted 10/5/2009 10:38 AM (GMT -7)   
Hi Nomadicmom Yes we do have 3 wonderful retired greyhounds. They are the best. They actually help me everyday deal with this disease. Sice they are pretty big dogs my daughter takes 1 and I take 2 of them out for a walk. It's fun to watch them get to know what the outside world is all about. All they ever knew was racing. Sooooo sad. Now they seems very happy and content. The way I look at it they help me deal with fibro and the pain and I help them learn how to trust and love people that care very much about them. Best thing I ever did was adopt them and give them love and support.
greyhounds mom 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17096
   Posted 10/5/2009 6:03 PM (GMT -7)   
Hi, greyhoundsmom, and welcome!  I'm so glad you found us and joined in.  Yes, this is a wonderful forum.  Our members love to help one another and, as a bonus, we really do care about each other, too.
 
I take a supplement called malic acid/magnesium.  It has helped me with pain and fatigue.  I also take vitamin D3.  Many with fibro are deficient in these vitamins and nutrients and that can cause pain and fatigue.  I still have pain but it is more manageable.
 
We usually have a thread at the top of the forum called Fibro 101.  It was lost last week when the forum shut down for a couple of days.  I have been working on putting it back together and it should be back up in a couple of days.  It will be the first thread on the forum so keep checking for it.  There are links in there all about fibro, stretching exercises, info on malic acid/magnesium supplements, etc.
 
Don't hesitate to ask questions.  We are here to help you.  I'm happy you have joined our family and I 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


greyhounds mom
Regular Member


Date Joined Sep 2009
Total Posts : 24
   Posted 10/6/2009 12:36 PM (GMT -7)   
Thank you Robin for the explanation on the nervous system and how it causes flare ups. I do understand better now. I try to excercise as much as I can. Somedays are good and some days can be sooooooo Bad. I am so glad I have people like you who truly understand the pain and can give advice on how to deal with it. And thank you Sherrine for the advice on malic acid/magnesium supplements. I will give it a try.
greyhounds mom 


LauraLea
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 10/6/2009 2:41 PM (GMT -7)   
Hi,
 
Glad you joined, let me just say that I just weened myself off Effexor. I would caution you about this medication, it is so so hard to get off of it. Yes it was working for me for about 9 yrs, then no longer getting any benifit. My doctor advised me to ween off, but didn't tell me just how hard it would be.
 
I actually opened up the capsule and counted out granules to ween off slower. Took me 3 months, my doctor told me it would take maybe 3 weeks NOT... Don't want to alarm you, but you might just discuss this with your doctor.
 
I am now medication free, only take a pain pill once in awhile when my back is really killing me. I got onto the spiral of medication for this, and medication for the side effect of the other. It became too much, I know not everyone can be medication free, in fact it is very difficult. Do whatever helps you, there is a lot more out there then just medication, but I also realize that many need some because most of us have more then just FM...
 
Hope you can share ideas and hope this forum will help.
 
 
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