So glad to find this site!
- My symptoms started 2 years ago after my father died and I wonder if that was a trigger.I had back surgery 3 years ago and have had constant pain that I thought was from the surgery.Thank God for my wonderful family doctor that thought I had lupus or fibro and wasn't crazy.Test ruled out lupus.I am 52 and feel 82.I cannot sleep,my skin itches constantly and my hair is falling out.The fibro fog is so annoying.I have severe stomach cramps, chest pain, and rapid heart beat.I sleep with an ice pack on my scalp because of the burning.My body hurts so much I don't want to get out of bed.I have losts all interest in sex.My worst fear is that my husband will leave me.I am disabled from my back problems and on medicare.I am so afraid of what the meds will cost to control this monster.It helps so much to read about others with fibro.My loving husband is having a hard time accepting my diagnosis.It is hard to explain.
- —Guest MsLogue
- I have been trying to explain my pain to my husband, your descriptiond are spot on. thank you
- —Guest Melissa Ball
What types of fibro pain do you get?
- ALL OF THEM! Luckily, I have my own terms and phrases to describe them to my doc. It took me a while to understand that this was ALL Fibro-related, and even though I have it doesn't help me that much. Just helps me (not yet others) believe that I'm NOT crazy .
- —Guest Aly freet
- I get what I call itchy/burny pain all over. It's similar to the bugs under skin pain. You have an itch that you can't reach because it's under the skin. Sometimes rubbing helps but usually nothing works but my pain medicine.
- —Guest slogoing
- Oh, you poor just diagnosed folks. There is NO help at this time. Take it from an old girl suffering since 1972. Arthritis doc's., Neaurologists, well meaning PC doc's. Amytriptolyn, Effexor, Lyrica, nope! Celebrex helps a bit but all you can do is the best you can do with good husbands and loving children . After 40 years of no diagnosis, misdiagnosis no sympathy/empathy/real help from the medical community--I praise the Lord for loving family and try to be an example of grace and dignity under pressure. I fail every day but you folks keep trying. Maybe you can be a shining light to your family and friends. And maybe some one of us with the energy and know how can organize and demand of the WHO, AMA, CDC that we deserve research. Fibromyalgics know alot. My sister with cancer once said "at least when I get up every day I know what my suffering will be." FMS--a surprise every morning.
- —Guest Dale Salley
Can barely hug my young children
- I am a young mother of 3 children of the age of 6, 3, and 2. My dear husband is my cook, my maid, my nanny, and my nurse at times. My life is turned upside down. I am in so much pain that I can barley stand getting a hug from my children. Sometimes I feel like my diagnose must be wrong because it has to be something more serious like cancer or something else. I feel that this has to be the most painful thing in the world. The worst is that no one understands how much pain you are in. And then on top of all of this is the expensive meds. I am a type of person that when I go shopping I don't buy anything for myself and now I am spending over $500.00 a month for meds that take the edge off a little bit if I don't over do it and do any of my mother or wife duties. I am so blessed to have such a great husband. But I just hope he doesn't get burned out. I could add the expense of a maid and personal chef but there goes the bank account.
- —Guest oh, Fibro why can't you leave
how I feel
- my pain is I everyday. sometimes its in my shoulders and neck sometimes I can hardly move my neck because its stiff. I can feel it in my elbows that will go up my arms. that makes it hard to brush my hair. but lately I have pain in my lower back that hurts when I stand. I just feel like crying . I just need someone who understands how I feel
- —Guest peggy howard
Losing it all?
- Why has this come on so suddenly? I have never really been "well" but since we moved to Florida almost 8 years ago, I started to feel good. Now I have started a decline and suddenly, I have this scalding, searing pain, muscle spasms that are worse every day, My limbs are starting to spasm so bad that my hands/arms, feet/legs will suddenly shoot out from my body. I am also starting to tip over when I walk. It's getting worse every day.
- —Guest Guestworkathome
what pain don't I have
- Pain -- every where from my clothes to my shoes-- to sitting to long or not long enough-when I bend down with knees bent the pain is excruitiating to get back up..I really have to say ..I have more Bad days than good .I am soo exhausted all the time and I try so hard to make time to atleast walk but by the time I get home from work , errands and such ---I am completely wiped out .. I have been through so many meds -- but I have such a high tolerance to them they never last long enough for me to have any enjoyment anymore. I remember when I could walk 4 miles , go to the gym and weight 135lbs now ..it takes me over 2 hours just to get myself motivated in the morning to get showered and dressed and this is an everyday routine, I am very frustrated,,,my weight has skyrocketed to around 200lbs & I am trying again this weekend to start walking atleast 15 min 2x's a day ...my feet hurt so severely I went and bought new sneakers again..these are tone ups ..I hope to gain myself back again....
- —Guest Christine T
Paint/ Pain by numbers
- You ever feel like you could paint your body with different colors depending on what areas it hit? What if you could assign different areas a color to describe the kind of pain you feel in them? I have pain in my hips that just stays there like a hibernating bear ( color code:orange) No one believes me when I say that I can't hold my arms above my head for more than about 20 secs before the pain becomes unbearable...that pain would be a "red". I was diagnosed w/ fibro before ANA speckled pattern + ( high) for Lupus/ MCTD also Celiac, with various allergies. Why do drs not do more studies on how these are connected?? Why don't they talk about it on the news so that we don't get those looks and comments that make us want to commit crimes of a violent nature,..?? If ppl could see my pain by colors, I would probably look like a tie-dye t-shirt. I can relate to the girl who said she could " see" the pain moving around. Like being painted with pain, or shot with arrows of pain.
- —Guest rini
Lightning through my bones, and....
- No sparklers here, just lightning. Can start anywhere,then just runs straight thru the bones. Might be femur, collar bone, ulna, tibia/fibia, ankle,...heck, even in the hands. Sometimes the pain just dances around like Fred Astaire. Fog has my family wondering if I don't have Alzheimers. I would laugh at this idea, but I'm getting worried myself. I don't take pain meds unless I absolutely need to; they rarely do any good anyhow. I have just reached a point where I give in to the pain and let it run it's course. Anyone who doesn't like it can deal with me when the pain subsides,..lol On the plus side, I know when it's going to rain and I can have outdoor stuff prepared beforehand!! :) I also have arthritis, and I know the pain is COMPLETELY different. To anyone with digestive problems: get to an allergist! I found out I was allergic to about half the foods I was eating. Including chicken, eggs, fish ( any with fins) , and coffee. Celiac disease as well--no wheat, oats, etc.
- —Guest rini
Walking on Glass
- I have had fibro for about 14 years. In Australia the doctors still do not believe this is a disease. My favourite pain is my feet feeling like I walk on broken glass. Everyday. I wear plastic shoes (like crocs) this are the only shoes I can tolerate. I am diabetic and gluten sensitive so I can have bouncing systems from the diabetics playing with the fibro. Very pleasant. I have however discovered that due to fibro I don't absorb mineral, vitamens very well so I take magnesium, a joint supplement, iron, and bone dense supplement . This works on the chronic fatigue so that I have some good days and can still work. I am a high school teacher. They are tolerant of my nerve damage (how I explain fibro to them) and my students are used to me confusing words (brain fogs) but I am still a great teacher. I have found that the main problem in my life (apart from the pain) is the doctors who have no idea. Thank you! I now know that I am not insane.
- —Guest Raveneve
Brittle feeling and now have lupus
- I was diagnosed with FMS over 10 years ago, just after having a hysterectomy and seemly unable to recoup. I suffered for years from endometriosis, which I feel was really the catylist for my FMS. The most frustrating for me is the traveling pain...never knowing where it will hit next. I experience a severe, wrap around my mid section, down my legs and up along one side of my body muscle spasm...my indication that a flare is coming. With in the last 2 months the pain level has increased dramatically and seemed different. I have a great Int. med. doc who works in conjunction with my naturopath, both began to suspect Lupus, an autoimmune disease. I was diagnosed with that 2 days ago...after many tests. I am 52 years old and try my best to stay active but it is getting more and more difficult. I do take Cymbalta, I could not tollerate Lyrica. Heat, rest & accupuncture are my best relief sources. My heart goes out to all who I have read about here today..good to know I'm not alone.
- —Guest JudyAnne
- Fibro itself is challenging but it does not make me sad. No that feeling of being isolated and sad comes from people who try to minimize what you are going through, even though most of them fall to the ground crying in pain from one little Charlie horse. I don't understand there need to minimize your suffering. They don't have to deal with it you do. I have found that warmth helps alleviate the pain, all forms of warmth. Warm soaks in the bathtub, heating pads, warm soft touches during massage & even warm encouraging words help. Cold is the exact opposite. Cold water, cold bedsheets, cold hard massages and coldhearted people cause stress and more pain. I don't know about you but I do enough suffering on my own and would really appreciate it if these negative nellies would keep their opinion to themselves & just stay away from me. These people do not want to help, I honestly believe they are attention seekers looking for an audience.
- —Guest W. Louque
- Knife in the Voodoo Doll- spike being pounded, leaves me feeling bruised & sore. Randomly Roving Pain - shockers or muscle spasms, quick electrical shocks. These sometimes lead me into full blown Charlie horses. Sparkler Burns - a nail jabbing with heat. I even had a wasp sting me and thought it was my "sparkle burns" telling me to hurry up girl you are about done, the major pain is coming. Rattled Nerves - this is the worse pain it's overwhelming & widespread. I call this rolling pain or pain waves. There is no pattern nor warning when it hits. It's all of the above plus this pain that seems to be rolling in waves through and around every part of my body.
- —Guest W. Louque