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calla lily
New Member

Date Joined Mar 2010
Total Posts : 4
   Posted 3/21/2010 7:54 AM (GMT -7)   
Hi everyone!  I am calla lily.  This is my first post and I am in so much pain.  I have fibro all over.  I was diagnosed with endometrial cancer in 2006 and developed serious pain after that. I finally got diagnosed with fibro in 2008.  Lyrica nor Savella helped I am trying Tramadol now.  This is really wearing on my body!  Has anyone gotten disability with this?  I also have migraines and a really bad pain in the center of my back that won't let me always walk upright and hurts so even when I sneeze.  The fibro affects my shoulders, arms, hands, and fingers.  They burn and go numb.  The backs of legs feel like pulled muscles.

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 3/21/2010 8:57 AM (GMT -7)   
Welcome to the family, calla lily. I'm so sorry you are hurting and are in so much pain.
This forum is filled with wonderful, caring people who understand pain because they live
with it also.

Finding the right medication is usually trial and error, what works for some does not
always work for others. We all tollerate meds differantly.

There are members who are on disability, I'm not one but I'm sure someone here will
be able to answer questions about it.

Because we are individuals are pain feels differantly. My pain is allover pain, that feels
bone crushing when i flare. I sometimes get the tingling, burning numbness sensations

Heat feels good to most fibromites, hot showers, and baths, heating pads or bed buddies
are used alot.
Check out fibro 101, on top of page one. Sherrine compiled a great resource for us!

I take Savella daily and use a muscle relaxer, cyclobenzaprine for flares.

I used to suffer chronic migraines and took Imitrex. I still will get the occassional migraine
and ride it out taking Excederin.

I'm glad you have found us. Others will be here to welcome you soon!

Hugs, Robin

PS   I forgot to tell you to exercise, it is the best thing for a fibromite, it relieves

stress and helps you from getting stiff and sore,


Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements

Post Edited (crazykitty) : 3/21/2010 10:01:32 AM (GMT-6)

Forum Moderator

Date Joined Nov 2008
Total Posts : 5951
   Posted 3/21/2010 9:09 AM (GMT -7)   
Hi, calla lily. Too bad to have to meet under such dire circumstances! I wish I could wave a magic wand and take away your pain. I've been where you are, and it is so hard to deal with. Lots of people have gotten disability with fibromyalgia, but I don't know the procedure.

Until you can get your pain somewhat under control, my best advice is just to try to relax (easier said than done, I know) and breathe deeply and steadily when it's so bad you can't think about anything else. That's what I do, and sometimes it's the only thing that helps a bit. A little heat, or maybe ice, visioning, gentle stretching....things you can do on your own to give you a feeling of some control and can't hurt are always an option.

As far as drugs, there's no surefire recipe - everyone's different. I couldn't tolerate Tramadol - it gave me chest pains, though it helped the Fibro, so that was out. Lyrica helped for a few weeks and then quit. Now I'm on my 5th day of Effexor - too soon to tell.

How is your relationship with your doctor(s)? Come to think of it, I had a hideous pain right in the center of my back for about a year after I got an epidural while in labor. I think there's a connection, though no doctor ever agreed with me. Then, thankfully, that particular one went away.

I hope you get help soon. This is a great place to come for morale boosting and good information. I'm a newbie myself and it's great!!

Veteran Member

Date Joined Apr 2004
Total Posts : 6056
   Posted 3/21/2010 9:58 AM (GMT -7)   
Sounds to me like you have some disc, nerve impingement issues. You may want to seek the advice of your doctor and ask if maybe a brace, some traction or some physical therapy might help. For myself, I have degenerative disk disease and use a thing called a Tru-back. I lie down on this curved thing and it realigns my spine and relieves some of the numbness in my arms and fingers. Also takes some of the kinks out of my back. Hope you find some relief soon.
~ Jeannie
Moderator for Fibromyalgia and Diabetes

Forum Moderator

Date Joined Apr 2005
Total Posts : 17524
   Posted 3/21/2010 10:17 AM (GMT -7)   
Hi, Calla, and welcome!  You have already been given good advice.  I just wanted to pop in and welcome you. 
Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibromyalgia and you will learn a lot there.
Have you tried a gentle massage?  That helps me a lot.  Here is a link to help you find a good massage therapist in your area if you are interested.
But, speak with your doctor about your back first to make sure there are no disc problems. 
If there are no disc problems, there is a good stretch for those muscles that my massage therapist gave me.  You bend at the waist and then swing your arms...any direction and every direction.  This has helped me.
I'm happy that you joined our family.  Keep asking quesitons and we will try to help you.  I hope to hear more from  you soon.
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

Sera Smiles
Veteran Member

Date Joined Nov 2006
Total Posts : 671
   Posted 3/21/2010 10:29 AM (GMT -7)   
Hey Lily! What a wretched time you are having. It won't always bee this way, tho. Keep on going through the journey and there is a light at the end of the tunnel. Many of the things that people have suggested really helped me, even tho when I was at my worst I couldn't stand being told to stretch, to vision, etc. It seemed so hopeless to me BUT I am in year 7 post-Dx and I have matured much more than my health challenges have :) All of these things work- at the beginning, don't forget breathing through it, cry if you need to, have a great pity party for one, get mad, write it down, holler! Read all you can, ask lots of questions, don't forget vitamin supplements B, D, Omega 3s. I can't stress nutrition enough, this has played a larger role for me than gentle exercise, altho exercise is a must for me. I've accepted that those hard aerobic classes and weight scultping classes are out for me now, but there are lots of things that I can do that don't bring on a flare that keep me limberish :) Good journey and keep believing in yourself. We are always here for you. Peace!
"A butterfly is most vulnerable immediately after its' metamorphosis."
Dx FM- 2003
Rx Meds- Ultram, Toprol, Cymbalta, Amitriptyline, Trazodone
OTC meds-  B Complex, Vitamin D, Omega 3, Aleve [PRN]

New Member

Date Joined Mar 2010
Total Posts : 8
   Posted 3/21/2010 10:36 PM (GMT -7)   
Hi calla lilly welcome!!!! I only joined a while ago but you will find these people wonderful and always here to help and answer your questions.

I also am in love with heat, ha ha. I have an electric blanket on my bed as well as an electric mattress pad so I turn them on and surround my body. I also have an electric throw blanket on my couch that I wrap up in to watch TV.

I have had this for thirty years and all I will tell you is the pain may not get better but you will learn to deal with it better. I was advised to multi task as it helps keep your mind busy. Sometimes it helps sometimes not. I usually play computer games and watch TV.

Hang in there, never give up.

Best wishes, Jan (cutechick)

calla lily
New Member

Date Joined Mar 2010
Total Posts : 4
   Posted 3/22/2010 9:41 AM (GMT -7)   
Thanks for all of the great advice guys! I do try the heat but can't really tolerate it that much because I have terrible hot flashes. I can't remember if I mentioned I had to have a hysterectomy because I had endometrial cancer or not and I flash pretty badly. I will look into the massage though. Has anyone else taking topomax for migraines gotten kidney stones? I had to have mine removed and could not understand why I had stones until I was reading the pamphlet for my meds.

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 3/22/2010 10:50 AM (GMT -7)   
Hi Cala Lily and welcome to the family. I'm sorry you are in so much pain. I think the burning pain is the worst, I don't get it often thank goodness.
It takes awhile to learn to live with fibro but many of us have learned our limits and when we can and can't do things. I know what hours during the day are best for me so only do things during those hours unless I don't have a choice than you plan accordingly. It really is all trial and error with what meds that work and how much you can get by with during any given day without over doing it and paying for it later. We are all here to help you figure all this out by telling you what works for us and answer the questions you have.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
Vit D/calcium

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