NEED ADVICE. HAVE FIBRO, IBS AND RHUEMATOID AND AM SUFFERING GREATLY

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Michelina on the beach
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/27/2009 9:08 AM (GMT -7)   
I am so sick, I can hardly believe it. Every single day, the first 3-4 hours are spent going back and forth to the bathroom with extreme cramping and pain. I've read that IBS often accompanies fibro and I guess I'm one of the lucky ones.
 
I was on methotrexate for rheumatoid but went off it several weeks ago as I was having periods every 7-10 days and they are heavy, causing yet another problem; anemia. My rhuem doc does not think it is the methotrexate while my gynie does.  I took myself off of it and my rhuem doc wants to "see what happens" amd prove or disprove my belief. In the meantime, I am still on 5 mg of prednisone a day, which the doc was hoping to ween me off of if the methotrexate worked.
 
Now, I am hugely symptomatic with rheumatoid AND fibro AND IBS. I am completely miserable and do not know where to turn.
 
I wish there was a doctor who treated everything, is there such a thing?
 
Everything hurts, just everything. I can not take pain meds as they make me sick so I am stuck with aspirin or Tylenol.
 
I am 49 years old btw and a widow. I lost my husband to cancer last November and he was always so helpful to me when I was sick. I miss him terribly and in many ways. We have a beautiful 11 year old daughter who is very helpful to me but I do not like to burden her and I try to do as much as I can. I am worried about the summer and do not want to be sick for 3 months of it.  We live in Chicago but will be spending the summer at our beach home in Florida and I am hoping the warm weather will help me. I think the sun always helps my moods as well.
 
Any advice you can share with me on living with these ailments would be greatly appreciated. I would also be interested in a good doctor near me in Florida. I am fairly close to Jacksonville if anyone happens to have a referral.
 
Thanks for listening, it helps a little just to write this down. I don't often share my pain with many and it is probably time I started. I've tried so hard to be strong and it is getting harder.
 

cry  

Michelle

 

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 5/27/2009 12:42 PM (GMT -7)   
Hi, Michelina, and welcome!  I'm so glad you found us and joined in.  We have some wonderful people here that love to help one another and we really do care about each other!
 
Michelina, I'm a widow, too.  I lost my husband when I was 50 and, lets face it, that's too young to be a widow.  I miss my husband terribly, too, but life has to go on and you will learn to function quite well without him.  Just take it a day at a time.
 
I don't have IBS but I do have Crohn's disease and that causes much of the same problems.  Have you kept a journel of what you are eating and how it affects you?  I know that certain foods give me some big problems so I avoid those as much as possible.  Perhaps that would help you.
 
I see a board certified Internist for my doctor and he handles most everything I have.  I don't want to spend all the time running from one doctor to another to another.  I do have a specialist for the Crohn's but have only had to see him 2 times in 11 years because my Internist helps me. 
 
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 (Tampa Bay area) 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.  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


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 5/27/2009 9:21 PM (GMT -7)   
Hi Michelle and Welcome!!

First, let me offer my sympathy at the loss of your husband. I can't imagine the pain it must cause. Sherrine is a wonderful model of how to survive after such a loss. She is amazing!

I am so very glad you have joined us. One thing I found has helped is to relax! The more you are worried and tense about things the worse the pain. And also, don't be afraid to share with your daughter. Obviously don't go on and on every day but do share what is going on and at 11 she's very capable of helping around the house and also to help you when you need it. It will make her feel very special and important that she is helping mom...and she'll feel needed as well. Kids are amazing!

Come join our Koffee Klatch every day where we just chat about anything except the 'P' word...(pain)..lol

Hugs,
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."
(\__/)
(='.'=)
(")_(")


Shash13
Regular Member


Date Joined Apr 2009
Total Posts : 179
   Posted 5/27/2009 10:48 PM (GMT -7)   
Welcome, Michelle! This forum is wonderful for caring and support-- so glad you found it -- I'm really grateful for it, as I am relatively new, too, and was feeling so alone.
I am so sorry for your loss........ it's so difficult, especially with FMS and its lovely symptoms. I echo Chutzie's sentiments about Sherrine's abilities, but I'd add that Chutz is great, too. BTW because of Sherrine's information I just asked my doctor about Vitamin D, and I was extremely low. (I go to an internist for everything.) I also agree with Chutz about sharing more with your daughter and letting her help you. I'm raising a grandchild, and she is also eleven. I shield her from some of the day to day constant stuff, but she knows the basics. She feels included and trusted.
Please post when you can...... we're taking turns hugging you......we care......we are here for you....
Shash
Dx: FMS,OA,depression,anxiety,DDD with 7 herniations so far,HTN,IBS,cardiac
stent,failing aortic valve,angina,migraines with aura,many surgeries,+misc.
Rx: Nifedipine,Atenolol,Enalapril,Simvastatin,Levothyroxine,Cymbalta,Bupropion,
Dicyclomine,Lorazepam,Darvocet,Percocet,albuteral inhaler,nitroglycerin,+
( novice with computer - patience, please!)


GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 5/28/2009 6:40 AM (GMT -7)   

Hi Michelle and Welcome-

Sorry to hear about your husband. This has got to be hard for you grieving and all the physical pain and IBS. I am 52 and on my own also with my 17 yr. old son. As tough as it is raising a child on your own- I have learned that we have each other, and that we make it no matter what happens.

Sherrine/Chutz has offered some great advice and I hope you can find a Dr. that understands fibro and the many other symptoms that come with it and can get you some relief. In the meantime, we are here for support!

Nice to meet you!

Jill


 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
 
Zoloft, Tylenol 4000 mg., Darvocet  

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