Hi. I'm a newbie

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luvspringflowers
New Member


Date Joined May 2009
Total Posts : 14
   Posted 5/1/2009 3:10 PM (GMT -7)   
Hi. I am a newbie to this site. My sister who has Crohn's disease introduced me. It is great to have a forum to be able to talk with people who understand this non-understandable fibro.
 
I started having pain in my low back about 10+ years ago. If I got down in a kneeling position or something I couldn't hardly get up. It was like my back just froze up. I thinking of course that it had to do something with heavy lifting; I am in the medical field. I thought for sure I must have a disc problem or something. Well the MRI came back negative.
 
I then started to have shoulder and neck pain. It would run down by arm and throb in my elbow and fingers. This went on for months before I went to the doctor. So it was back to the MRI again no sign of disc problem. Nerve conduction tests (ver painful); fine. So it's like what is going on????
 
My doctor would not prescribe any medications and was absolutely no help in trying to find a solution. He made me feel like it was all in my head. I got to the point where I would just not say anything about how I felt because I didn't want to be a "complainer".
 
about 3 years ago we moved and I got a new family doctor. Finally someone who would listen. He did blood work which indicated I likely had Rheumatoid Arthritis. I was put on medications (prednisone, sulfasalazine) and referred to a rheumatologist. Okay to now it gets even better. The rheumatologist doesn't think I really have RA but more likely fibromyalgia (most likely both haha)  He just added plaquinel to the mix, whoopie at least I'm covered for malaria. Last year I started on Lyrica; not really helped. I am to be going to another rheumatologist; maybe this one will have some answers and/ or treatment. I've taken the prednisone so long that I've gained  50# in the past 3 years!!!! The pain is worse than ever and now I'm so fatigued I feel like I could sleep for about 3 days but I don't sleep well, wake up so many times during the night in pain.
 
Well that was much longer than I intended but really only scratched the surface.  smilewinkgrin I'd love to hear what types of treatments have worked.
 
 

vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 5/1/2009 3:35 PM (GMT -7)   

Hi there and welcome to the forum!  Maybe others can give you better info on what meds they take that work for them...I only take Advil and Tylenol because I am allergic to so many opiate type medications that might really take the edge off.  A few things I can add is that my father had RA and I went to many doctor appointments with him.  It was obvious he had it...twisted fingers and red swollen joints.  We were told that with RA the symptoms are bilateral...in both hands or both knees etc.  Also blood work for RA factor is not always correct...ANA's are also wrong many times.  All you need is a hang nail to show a high ANA reading.  His RA factor came back negative twice and his sed rate normal...even though he was riddled with the disease.  I guess I am suggesting that it is good that you get a good rhuemy that you have confidence in and will not just nonchalently diagnosis you because he wants to say 'something.'  And if one set of blood work tests don't make sense...have them done again.

Some doctors still do not treat fibro with the respect it deserves.  I heard it was all in my head for several years before be dx'd.  Finding the right doctor is key.  Prednisone is useless for fibro...at least that is what my doc told me.  I would think that if you really had RA, it would be helping with the pain.

Moist heat, light exercise and a good nights sleep...that's what helps me the most.

Feel better

Donna


fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium


Binki
Regular Member


Date Joined Jan 2009
Total Posts : 386
   Posted 5/1/2009 4:32 PM (GMT -7)   
WELCOME!

I can relate to your story. I went through handfuls of different types of docs and tests, many x-rays, mri's and ultrasounds. Every time tests would come back negative. I work full time in an admin. position, so I sit just about all day. It has been real tough, but I am blessed to have the employer and some of the employees I work with, they've been pretty supportive.

I have been dealing with all different types of symptoms over the last 10 yrs. The last 4 have been the toughest. I use to take higher dosages of gabapentin(neurontin) when I was having real trouble at the first of these last 4 yrs. I take some pain meds only when I REALLY need to get a break, so I can rest. But that is not very often. I use rest (2 - 30 to 40 min breaks at work a day) as much as possible. I do exercise, recumbent bike at home. I can't walk in my neighborhood anymore, too many hills, makes my back and hips ache so. And I have a close relationship with my heating pad. :-)

I have gained 50 pounds in 3 yrs as well, sucks! But I know it is because of lack of exercise and the drugs I've been on. I know I am not normally this weight so I tell myself that one day I well be a little lighter. But my well being is much more important at this time and I know I eat well. If I can battle Fibro everyday.....I can battle some fat cells off my behind,LOL. Fibro is making me be patient with myself. Take things at an easier, gentler pace.

Take it easy,

Hugs,
Lori  
 
Dx Fibro 1/2008, gastritis
 
300mg Gabapentin, 50mg Pristiq, Vitamin D3, Menopausal Support Multi-vitamin, Ultracet and/or Fentanyl patch as needed


SleepyBug
Veteran Member


Date Joined Nov 2008
Total Posts : 1097
   Posted 5/1/2009 7:50 PM (GMT -7)   
Hi, Flowers!

I love your screen name, too :)

I also agree with Dani that moderate exercise is a huge help. That's my main coping mechanism-that and dietary changes and lots and lots of moist heat. (I don't take any meds, either)

You mentioned being on prednisone-are you still on it? As Donna said, I don't think it really helps Fibro at all, and in my case it makes it much, much worse.

And you are so right-Fibro is definitely the non-understandable disorder/disease/whatever you want to call it. One thing I've learned from coming here is that while some things are common amongst us all (pain, fatigue, the fog) we all have our own individual symptoms and complaints and we all came "down" with Fibro in different ways and we all have different ways of dealing with it. It's definitely a puzzle sometimes!

I'm glad you've found us and joined right in! This is a great place to find support and friendship. Also, I would definitely recommend that you check out the Fibro 101 thread up top if you haven't already. There are great tips and exercises and other wonderful information in there.

Welcome to the family! :-)
love and hugs
~danielle


fibromyalgia, ibs, gerd, anxiety

We either make ourselves happy or miserable. The amount of work is the same.~Carlos Castaneda

I wish you all the joy that you can wish.~William Shakespeare

Housework, if you do it right, will kill you.~Erma Bombeck


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 5/1/2009 10:27 PM (GMT -7)   
Hi and welcome to our family!

I am so very sorry you have to suffer with this darn disorder, but at least you've joined a wonderful family of friends who will always be here for support and understanding. I am very lucky that my PCP dx'ed me and had a rheumy confirm. It was easy but the symptoms were very obvious in my case. I've tried every drug that could possibly help and the only thing that does any good at all are pain medications. Plus learning how to live with this.

Do as much reading as you can, ask questions but do be wary of goofballs offering 'the cure' or a 'magical elixir' for fibro...lol As we all know, if there was a cure none of us would be here and in pain.

Glad to have you in the family!
Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
(\__/)
(='.'=)
(")_(")


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 5/2/2009 6:39 AM (GMT -7)   
Hi Springflowers and welcome. I love them too and my tulips are about gone. I guess I was lucky and didn't really know anything about fibro til my first real flare and everything fell into place for my GP when he did the tender point test. I had already been tested for all the other things.
 
I take 4000 mg of tylenol a day, 100 mg of amitriptyline and use lidoderm patches. I am going to try a little neurontin soon. Heat!!!!! Wet or dry, I'm sitting here now with my little heater on me to warm my muscles and it's 55 degrees out. I will be so happy when I can go out in the sun in the mornings to warm my muscles.
 
Make sure you get your vit D checked. I found out my is pretty low and I can't believe how much better I feel since I have been taking supplements and I'm sure it is still pretty low. Can't say it has helped the pain but it has given me a little more energy, motivation and just a feeling of well being. B12 is another one to have checked, my DIL has both low.
 
This forum is fantastic, I've been on here for a year and a half and I'm still learning things about fibro I didn't know. Read, ask questions and we even let you vent when you need to.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 5/2/2009 10:17 AM (GMT -7)   
Hi, luvspringflowers, and welcome!  Fibromyalgia is a curious illness.  Fibromyalgia waxes and wanes.  Sometimes you are in a lot of pain and other times you are much better.  I have had fibro for 22 years and have never been without pain.  But, I have learned how to manage the pain and have had a full and enjoyable life with fibro.  We need to focus on the positive things in our life and I think you will find that the pain will fade a little in the background.  I don't think about how I am feeling.  I never ask myself that.  That will only cause anxiety.  Instead, I know what I need to do and what I need to take in order to control the pain so I can do what I planned for the day.  So, keep a positive outlook on life and look forward to each new day with anticipation.  You can have wonderful times, even though you have fibromyalgia.
 
I do not take any of the "high powered" meds for my pain and fatigue.  I use ibuprofen with food and extra strength Tylenol for pain.  I also take malic acid/magnesium supplements for pain and fatigue.  These don't work for everyone but many, including me, have had good results with this supplement.  It might be worth a try.  You see, many with fibro are deficient in these two nutrients. 
 
Many with fibromyalgia are also deficient in vitamin D.  I live in Florida and who would have thought I'd be deficient in D!  I am presently taking 3,500 IU of D3 a day to try to get in the normal ranges.  Some members are taking much more.  Vitamin D deficiency can cause pain and fatigue also, along with other problems, so it would be good to get that checked out at your next doctor's visit.  
 
Be sure to check out Fibro 101....the second thread on the forum.  There are links to good info about fibromyalgia including a list of symptoms and also a link all about malic acid/magnesium supplements and how they work in your body.  There are some great stretching exercises that you can do sitting down, too.  You will learn a whole lot if you read that thread all the way through.
 
Moist heat is great for fibro.  I love a hot shower.  Many use Bed Buddies.  You can get these at Walgreen's and other places or you can make one yourself by taking a tube sock, filling it 2/3's full of raw long grain rice and tying a knot at the end.  Microwave it and it gives off moist heat due to the moisture in the rice. 
 
It is important to keep moving with fibro.  If you sit or lay too much, you will be stiff as a board!  The gentle exercises in the Fibro 101 thread are really good and do help.  Walking is a great weight bearing exercise and will help keep your bones strong, to boot!  If you have access to a pool, that is great also.  
 
Be sure to pace yourself.  You can't get things done in the same time frame as you used to before fibro.  But, it will all get done.  Just start chipping away at what you need to do and you will be amazed at what you can accomplish!  Be sure to give yourself a big pat on the back too.  Fibromyalgia is not for sissies so you deserve a lot of credit for the things you do. 
  
I'm so glad you have found us and joined in.  You have come to a good place.  We have wonderful members that love to help one another and, as a bonus, we really do care about each other, too!  So, read the Fibro 101 thread, back posts, and ask questions.  We are here to help 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


luvspringflowers
New Member


Date Joined May 2009
Total Posts : 14
   Posted 5/2/2009 4:51 PM (GMT -7)   

Hi again. Thank you all for your kind words and support. I feel better already!

Me and my heating pad spend time together all the time LOL. It's like it is attached to me sometimes. As for those you who mentioned the vitamin D deficiency; I'd never heard that. Great question to ask the doc. This time I'm making a list!!!

I wish we had a pool..... I think that would help so much just getting the exercise. hmmmm maybe insurance will pay as therapy???? We can always wish. I'll definitely check out the fibro 101 thread. Never can learn too much.

Take care!

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