Fibromyalgia Awareness | Information, Tips, Support, Patient Stories

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Dear Friends with Fibromyalgia and Chronic Pain,

Hope you are feeling good today!

I understand that sometimes (alright, most of the time) we are in so much pain that we want to just tell it to someone who wants to listen. Somehow, just talking about it makes us feel better. But sharing it almost everyday sounds like 'too much complaining' to those who do not have this condition. Also, sometimes we just want to speak to someone who really understands and perhaps has some tips / sound advice for relief.

Please use the comments section of this page to speak out and interact. Share what you have to say with birds of the same feather, or shall I say butterflies of the same wing! Maybe you just want to vent out your feelings, maybe you just want someone to listen, maybe you need some quick relief tips, maybe you have some advice, maybe you just want someone to tell you, "Hold on, it shall be fine!", maybe you want to give hope to someone... whatever it is, this is YOUR PAGE!

So let's start talking!
How are you feeling today?

Love,
From a person with Fibromyalgia to people with Fibromyalgia

10 comments:

  1. Julie Evans, WV

    Today has started out a bit rough. Didn't want to get up this morning. Back hurts, wrists & finger joints hurt. Having a bit of fog or difficulty concentrating here at work. Already my legs are hurting from sitting for 30 minutes. Dreading going home this evening and looking at my dirty house all weekend. I just don't feel up to cleaning it. Thanks for listening.

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  2. Hey Julie Evans, just relax for some time. try meditation or just watch something you like on the television. About the house, clean it up when you feel better, pls do not overexert at this stage. Take care and feel free to write here. Gentle hugs.

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  3. My wife age 40 yrs is suffering from complete body pain. One doctor has diagosed it as fibromyalgia but has not prescribed any medication.

    The symptoms are as follows:

    Pain all over the body & more severe at specific points
    Fatigue
    Sleep difficulties
    Loss of memory / difficulty in remebering
    Morning stiffness
    Muscle knots, cramping, weakness
    Digestive disorders
    Itchy/burning skin
    More urinating frequency
    Too much intake of water
    Mental depression

    It is more severe on the right side from shoulder till the leg possibly because she works with her right hand. It is very difficult to get up from bed during morning. Gets some relief when some muscle pain relief oil is dabbed/massaged lightly on the pain areas.

    MRI full body was done but nothing abnormal on the spine or any other part has been found.

    She needs urgent medication as she is not able to tolerate any further. Awaiting your early response.

    Thanks & Regards,
    N K Das

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    Replies
    1. regrettably there is no magic fix
      i hav sufferd 4 over 20 yrs - my pain used 2 b unbearable - slowly over many yrs & trying every med known 2 mankind i hav emerged w/ slightly less daily pain but after all th yrs my body has deteriorated frm th weakness, pain, inactivity & weight gain
      u can try any & every med tht may help - different things work 4 ppl - a healthy diet w/ as little 'junk' (additives, processing, etc) is critical, a ton of rest, a positive attitude tht it 'CAN' get better - just like we get sick we 'CAN' get better - it's not a given just a 'HOPE' & possibility - also, try every modality tht's out there, massage, acupuncture, meditation, biofeedback, etc & as much exercise & activity as possible. (lite stretching, swimming, walking [whatever possible])
      there was a time i had 2 wear a neck brace & could not hold a coffee cup but i tried every med out there & i'm better, still debilitated but not as excruciating -
      DO NOT, EVER, GIV UP - NOT EVER !

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  4. Dear Mr Das, I am sorry to hear about your wife's condition. I presume you are from India. The symptoms are pretty much of fibromyalgia (i am not a doctor, but suffer from the condition myself).

    I hope you are seeing a rheumatologist, that is the specialty area. I wrongly consulted an orthopaedic earlier.

    If you are in Mumbai, I can refer you to my doctor who is really good.

    Please feel to write to me on contact@fibromyalgiaawareness.com
    Also, warm water bath helps. And for immediate relief, try having ginger tea, and most importantly, she should not be in the same position for long. My understanding of morning stiffness is since we stay in the same position all night, it hurts a lot and gets stiff. Ask her to do little movements of ankles, joints etc, like stretches and not to immediately get out of the bed. Feel free to talk here. Also, if you are on facebook, we have an active page there where people are continuously active and can offer useful tips.

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  5. My name is Kate, I turn 15 in a week, and I have sever Fibromyagia. And right now I really need to rant, so....
    I am in so much pain everyday,and the confusion, balance problems, stiffness, fatigue, depression, weakness, sensitivity, and every other symptom make life so difficult. I am behind in so many of my AP classes, and have missed so much school this year that they might not let me advance. I just keep falling behind in life. I had to give up my part time job, color guard, Girl Scouts, volunteering. Most days I do not even have the energy to read, which is something I love to do. I keep having to make sacrifices in life, and give up what I love, because I just can't physically do it.
    Worst of all, no one I know understands. My parents say they do, but they don't feel it. My peers, teachers, and even my doctor just continually judge me, and act as if I have made the whole thing up. Other family members and friends tell me the whole "You don't look sick." or "You just need more exercise..." lines. I feel constantly judged and criticized for something that is not my fault, and that I don't have control over. I don't know what to do...and I hate that, and I hate having FMS.
    Any Advice?
    PS: Thanks for your Website it has helped me some, and I hope it continues to help others.

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    Replies
    1. Hi Kate, guess what? My name is Katie. I turn 15 in August, 2015. I've had FMS since I was only 9 and it wasn't till I was 10 that I was diagnosed. Before being diagnosed I was told that it was all in my head, that I was imagining it, and I was even taken to a psychologist.

      Now, thankfully, my family knows it's real. But they still don't understand. They have no idea how bad it hurts. I deal with horrible pain, headaches, fatigue, insomnia, so much brain fog it takes me awhile to do simple multiplication or even adding. I have sensitivity to pain, pressure, heat, cold, lights, and sound. People are afraid to touch me. I've been dealing with it since I was only 9, but it has only gotten worse, and I recently developed new symptoms like the sensitivity, brain fog, and headaches I mentioned.

      Worse thing is, not many know what I'm dealing with. I appear as a normal 15 year old girl. But I ache inside. And I HATE having to ask everyone when I tell them I have Fibromyalgia, "Do you know what that is?" And I HATE having to explain, because I can't explain well.

      FMS has ruined several things for me. I'm not as productive as I used to be, especially in the morning. I can't run and play and do activities like other kids can. I can't stay up all night at "Lock-In" parties. And people give me funny looks if I cry out in pain randomly.

      Kate, keep fighting. Keep trying. Keep persevering. God bless you.

      - Katie

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  6. Hi Kate. I'm 18 (19 on Sept 5th) and have suffered from FMS since I was 12, so I know what you mean in terms of missing out on school. I had below 20% attendance when I was in High School. I also had to drop out of College because of the pain.

    If you live in England, you can easily get onto a course of your choosing at The Open University, part time - the best thing is, it's home study! So you don't have to go out to classes, and you can do it in your own time. I recently started my Literature Degree with OU, and I have next to no qualifications.

    The best thing you can do to have your family and friends realise what you're going through is ask them to read some stuff off this website, or another, or something you write yourself, explain it's an "invisible condition" and exercising more just makes it worse. Some of my family have done this and they still don't understand, and if this happens, all you can do is ignore them and carry on with your life.

    It is difficult to get used to the symptoms, but there ways around some of them. With the Fibro Fog, for example, I have an app on my phone called 'Reminders' that sets off an alarm when I need to do something (after I add it in, of course). You just have to know what you're looking for.

    Soft hugs, Sophie.

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  7. Hi! Iam visiting this site after a long time. Pain has always been their. The funniest thing is that when I perform pooja to god with lovely flowers my fingers, elbow. ,shoulder everything pains. But I still go about as it gives me peace and helps me with the pain which will be their through out. - Padmaja ,mumbai

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  8. Good day! I am feeling pretty good this morning. Stretched before starting my day and am hopeful that I will have a good day.

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