some questions

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New Member

Date Joined Apr 2009
Total Posts : 11
   Posted 4/14/2009 9:31 AM (GMT -6)   
I have just recently been diagnosed with fibro....originally they thought it was PMR but the steroids didn't help they actually made it worse (I know have steroid myositis which I hope will go away once I am completely off of the steroids.)  My question is, does anyone have pain so bad in there legs around the knees and lower back that make it almost imposible to walk....There is no pain in the knee, but seems to be above and below the joint and in the soft tissues of my legs...It is worse on some days than it is on others...Also, do any of you have problems with your fingers cramping and hurting once again in the soft tissues...
Also, does snyone on here use tylenol to control the pain...I am and it seems to not be working as well as it was....
I look forward to your responses.

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 4/14/2009 10:01 AM (GMT -6)   
Hi Virgil and welcome. I don't have much pain in my legs, it's all in the upper body. When you say soft tissue could it be in the muscles, ligaments or tendons??? I do have knots in the muscles going down the outside of both thighs. There are many on here that have a lot of pain in their legs so I'm sure you will hear from them.
I'm glad you joined us read the fibro 101 thread, second on first page, it contains lots of great info.
I use 4000 mg of tylenol a day for the pain but it hasn't been working that well for me lately with all the spring weather changes. If it wasn't for my hands I could get by with the tylenol, I use lidoderm patches on them. I haven't given in to narcotics yet.
You will find this forum very helpful, we are always here for each other.
luv and hugs
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
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Veteran Member

Date Joined Nov 2008
Total Posts : 2854
   Posted 4/14/2009 10:41 AM (GMT -6)   

hi...I have a lot of pain in my legs.  It starts in the middle of my butt, into my hip then down my thighs to my knees.  I limp when I walk.  It's mostly on my right side...and it throbs so much it wakes me up at night.  It doesn't hurt when I press on my you, it seems to be in the tendons or soft tissue.  I don't take anything except Advil and Tylenol for pain but it doesn't help much.

When my hands are hurting, even the pads of my fingers ache.

Hope you feel better and welcome.



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

Regular Member

Date Joined Aug 2008
Total Posts : 326
   Posted 4/14/2009 11:01 AM (GMT -6)   
The majority of my pain is centered in the hips and legs. Sometimes in the low back, but today is a prime example of a day where it's in the legs. I'm off work today simply cause I couldn't seem to bring myself to walk across the field that separates the train stop from my work place. It's not a super long walk, it's just that it was in the 30's this morning and with all the pain it seemed daunting.

I've been seeing a spine specialist and they've been trying to determine if any of this is due to spinal or hip issues as it's been a few years, and it's more in the left side of my body than the right.

Tylenol stopped cutting the pain all over a long time ago. I went narcotics when it went into the hips and legs, and for the most part I haven't regretted it. Except the cost.

Also, welcome and I hope you find people here to be as beneficial as I have. I don't post a lot but I do read regularly.

Veteran Member

Date Joined Apr 2004
Total Posts : 6056
   Posted 4/14/2009 11:24 AM (GMT -6)   
Me too! I can't walk much but I swim at the Y for my exercise and finish it off with a soak in the hot tub.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross

Forum Moderator

Date Joined Apr 2005
Total Posts : 17060
   Posted 4/14/2009 11:43 AM (GMT -6)   
Hi, and welcome!  Most of my pain is centered in my back, shoulders and neck.  I do get pain in my hips, knees, feet, and hands occasionally, too.  I use ibuprofen with food and Tylenol for the pain. 
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

Veteran Member

Date Joined Jun 2005
Total Posts : 610
   Posted 4/14/2009 12:27 PM (GMT -6)   
My legs ge the worst cramp type pain to the point where I just wannra crwl up in fetus position and cry, and staying still makes it hurt more. It seems like most of my pain is my lower back, butt and legs, but sometimes my upper body will hurt alot too, but it seems to always be my lower part of my body.

26 year old Female , single mother of 2 kids, on SSI for migraines, pain, pancreas issues
All the things broken with me: Migraines, Fibromyalgia, Chronic lower back pain that causes severe pain/numbness/tingling especially to my left leg,Arthiritis in my back, Genetic Pancreatic Divisum that causes chronic pancreatitas, Asthma, Depression w/Anxiety/panic attacks, Bipolar
Prescription Meds:Suboxone 24mgs daily, Cymbalta 60mg nightly, Lyrica 50mgs nightly, Imitrex as needed, Ibprofen 800 twice daily, Zanaflex as needed, Ventolin as needed for asthma attacks, Advair twice daily
Over the counter meds: Benadryl nightly for itching due to meds (not sure which one yet), and Biofreeze  
Surgeries: Gallbladder removed at 15 years old, 2 ERCPs, stent put in pancreas, countless upper GI scopes, marsupilized bartholin gland cyst
"Never go to a doctor's office whose plants has died."

Regular Member

Date Joined Feb 2009
Total Posts : 210
   Posted 4/14/2009 12:48 PM (GMT -6)   
I too get pain and knots in my legs, butt and hip. I do get cramping in my fingers. I try giving myself a massage, but then my hands just end up cramping more. Yesterday I tried walking 5 miles, ended up I could only make 3, when I got back I was cramped up. I take a Narcotic not alot but it seems to be the only thing that gets me moving again.
Fibromyalgia, Hashimoto Thyroid disease, Chronic pain.
 All things are possible thru Christ Jesus who strengthens me

Veteran Member

Date Joined Mar 2009
Total Posts : 599
   Posted 4/14/2009 5:26 PM (GMT -6)   
I have a new limp. This week all my pain seems to be centered in a hip (the joint, not the tissue) and both knees, so I'm moving slowly. during the day I use extra strength Tylenol, about 2000mg, and one flexeril about noon to help get me thru the workday. Today I can hardly walk so I had to call in and miss a day of work.

Regular Member

Date Joined Nov 2008
Total Posts : 263
   Posted 4/14/2009 6:47 PM (GMT -6)   
My fingers are the worst for stiffness/cramping. The neck and shoulders and back worst for pain. But last fall the pain was so bad in my knees/legs that I walked with a cane and even ended up in a wheelchair once. I'm better now with new meds though - back to power walking and Pilates.
I have Fibromyalgia, and nothing else!
I take Lyrica 225 mg/day and Tramadol (150mg time-released) and amytriptilene 7.5mg

Veteran Member

Date Joined Jun 2008
Total Posts : 1279
   Posted 4/15/2009 9:01 AM (GMT -6)   

Hi Virgil and Welcome-

My pain is all over but seems to settle in my upper back and shoulders. And yes my hands will go numb and/or cramp up if I use them for any length of time, like writing or typing.

I take Tylenol 4,000 mg. a day for pain and have Darvocet for back-up. The Tylenol does not take the pain away, but it takes the edge off.


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

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