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Dr. P. and places hurting
1wareaglefan posted:
Hello, All...I wanted to put this out there for Dr. P. along with everybody else with this horrid illness. Geesh! We can't even call it a disease!

I've noticed in the last few months I'm adding new hurting places. The others haven't gone away, just more have joined in on the fun! The latest to join in are feet/ankles and my hands/wrists. Is this normal?

I'm also about at the point where I may look into PT/massage. I've not considered it before, because of the money involved. Any of you recommend PT/massage? Would I have to go to 2 separate places, or is there such a thing as a fibro-friendly physical therapist who could do it all?

Thanks for any replies......Elizabeth
glad2bhere65 responded:
Hi Elizabeth, My worst trouble spot is my left upper arm, but I have aches and pains elsewhere too. I think it depends on what I was doing. For instance, after a walk, my lower back hurts for a while. I use the heating pad a lot at home, and I've found a work at home job, so that is perfect for me. (with Alpine Access, a callcenter)

I was thinking about getting a massage a while back, but I couldn't stand the thought of any pressure on any part of my body, because I was afraid it would be painful, and of course, we have enough of that. But if someone is trained on how to massage a fibro patient, that might be something good to look into. I'm thinking PT would mainly be showing you how to stretch effectively or something, but I never had that either.

I know that wasn't much help, but I do know where you're coming from in asking this. I hope you're having a good evening..

Maurny responded:
Hi Elizabeth, I'm like you and also have also added new hurting places. It is such a 'unfair' illness. Tonight I can hardly place any pressure on my heals. It is so so painful and this area flared up yesterday after a short walk. oh well, another long, sleepless night.
I was having massages but they became too painful. Even gentle touch hurts. Reiki helped soothe my body, but its expensive
I've meditation with visualisations and positive self talk daily so am positive this will assist me.
However, I would have no hesitation going to a physio or massage therapist who either has fibro or is very experienced working with our group.
Hope you find something of benefit
maggiethedoglover responded:
Hi Elizabeth,

I am so sorry that you have added new hurts to those you have already suffered from. My wrists/hands and feet have all bothered me at times. Sometimes the bottoms of my feet hurt so bad that I cannot stand.

Do you have health insurance? I know that mine (Humana) covers PT but not massage. However, the last time my doctor referred me to PT, they did heat treatments and massage as part of the PT and it was all covered by Humana. It really was wonderful while they were doing the heat treatments, etc. The problem was that the results were so short-lived. If you do go to PT, be sure you tell the therapist about your fibro and, if anything hurts, let them know immediately.

Hope you find something that works.

Soft hugs,

Life is a shipwreck but we must not forget to sing in the lifeboats - Voltaire
Mark Pellegrino, MD responded:
Hi Elizabeth,

So your body is having a fibro fun-fest, huh?! Sorry you're hurting in more places but that's certainly "normal" for fibro, unfortunately. :(

Think of fibro as rewired central nerves that make any place of our body prone to increased pain at any time. I'm reminded of this everyday when I examine patients. Upon examining my patients, I'm always finding painful areas (ie hands, feet, etc) that may not be hurting spontaneously but hurt when I press. (Yes, I've been told I have steel thumbs!)

These painful but "quiet" areas noted on exam are potential areas to join in the future fun, as you say. We try to prevent that from happening by treating and managing overall fibro, but fibro doesn't always do what we hope. But many times the flared up areas settle down again so I hope that happens for you.

I often prescribe PT with an experienced therapist to include manual work, myofascial release, massage, and other soft tissue work to try to help settle down all this fibro fun. Massotherapists are great too; I wish the insurances would cover specialized massotherapy treatment though.

Even though it was named a syndrome, FM is felt to be a disease of central pain processing. It has been described as horrid and fun and those who have it know exactly what that means!

Dr. P
Pixe5 responded:
Hi Elizabeth,

Just to let you know that some chiropracters have massage therapists in their offices. It might be covered under insurance. If the adjustments are too painful you might be able to talk your doctor into letting you just have the massage therapy.

1wareaglefan replied to Pixe5's response:
Thank you all for your responses! Very much appreciated!

sickbuthopeful replied to 1wareaglefan's response:
My new doctor has suggested that I go to the pool at a nearby hospital after work. I haven't tried it sounds ok but I have to find the energy. I am usually very tired after work. Good bless.
maryfibro24yrs replied to sickbuthopeful's response:
Hi I am still new to this particular brand of communication so am slowly working my way around! I have found the pool to be very beneficial. When I was at my brothers not long ago I'd go into the pool about an hour before bed and just free float around and it did help a lot! Here at home there's a public pool where I enjoy the same type of activity. I go early before all the younguns come b/c it's more relaxing for me that way! I did try actual swimming but found that any type of repetitive motion on any part of my body particularly my neck and shoulders ends up hurting worse so free floating is what I do! I have no idea what I'll do in the winter yet!
AnnetteLad replied to Mark Pellegrino, MD's response:
Hi Doc,

I have only had Fibro for four years. I have yet found anything to help me. It just gets worsest and work, friends, and family get bored of hearing about it and don't understand what I am feeling. It doesn't help when everything you read tells you to exercise. Everybody thinks that is the cure all. Is there anything out there that I could get for the to read and understand all the pain and suffering. When I call off or ask to leave early (even just 15-20 minutes early), my boss looks at me like I'm faking.

I have worked with my family doctor and every specialist he has sent me too. He just had me go to a specialist here in Col., Ohio. My family said he had went to some lectures by this guy. When I left his office I felt hopeless. He prescribed gabapentin (which I have been on for a while). Told me to increase it until it works and he would see me in six months. Sometimes all I want to do is cry it hurts so bad. The answer there is go see a psychiatrist.

My marriage has fallen apart and I'm afraid of losing my job. I just don't know what to do anymore. I feel like I'm loosing control.
AnnetteLad responded:
I am a diabetic along with Fibro. There are times that I can feel all of my injection sites and pain shoot down each one. Also, I have had five surgeries and there are times that those spots hurt as if I had the surgery yesterday. I don't understand but I'm told it's a part of Fibro.

Go to the emergency room they see on your chart you have Fibro and they do nothing, saying it's the Fibro, then send you home.

I don't understand the pain or the resistance to help from the medical world.
me_n_my_4 replied to AnnetteLad's response:

My heart really goes out to you I can't even begin to imagine the pain you are in physically and emotionally. I have Fibro and RA myself and I can't imagine having diabetes added into the mix. I am not diabetic myself but my husband is and I know that has it's challenges as well. One thing I do know is how it feels to go to the ER and get no help or no comfort for pain. I haven't had any surgeries or anything but I think I have pain similar to what you are describing. It has been all over at different time sometimes on my leg or arm or neck or pain and It hurts so bad that even the feeling of my shirt rubbing against it or someone touching me just makes it worse.

I am not sure where you are located but does your job have FMLA that you could maybe qualify for? I know for me that has been god sent. The company that I work for I can take my FMLA intermitinent so it's not continuous but it does help when I have having flares or bad days and then it doesn't matter what my boss think and It keeps my job somewhat secure. I know what you mean because the exercise thing does get played out afterwhile. Maybe you could get a second opinion to see if you can find more help. Have you looked into a pain managment clinic? If so did that help any?I hope that you find some comfort soon.

Soft hugs coming your way!!
AnnetteLad replied to me_n_my_4's response:
Thank you for your kind words. I have the Fibro pain in my legs, feet, arms, hands, thighs, and shoulders. It feels like someone has kicked me as hard as they could in the shins, every day. I just thought it was wierd to feel pain where I take my shots or where I have had surgeries. I have tried a Chiropractor, Pain Management, RA Doc, a Fibro specialist, two Physical Therapist and a deep tissue masage Therapist. Believe it or not the deep tissue masage worked. At first it hurt and I went home took some meds and went to bed. I stuck with it and it started feeling much better and helping. I just can't afford it. I know it is a process of elimination. I'm trying to hang in there. What choice do we have? I'm thinking of acupuncture but that scares me.

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