• 6 months ago

    Newly diagnosed & need support

    I was recently diagnosed with Fibromyalgia and I have to say...I've been in for the fight of my life. Sometimes getting out of bed in the morning is too much for me. I've really been getting quite depressed. My husband just doesn't understand and my children view me a nuisance saying things like, "Mom, you just don't WANT to come to our games." My husband even went as far as to ask my kids if all I do is sit on my butt all day long. All I want are people who understand me and what I'm going through. I'm truly suffering and I would love an outlet. Could you all help me?

    Also, does anybody have any home remedies that I could try out? I am quite the homebody and I would love to help treat my symptoms from home.

Responses

  • 6 months ago

    RE: Newly diagnosed & need support

    My mother has fibromyalgia. She manages it entirely with OTC pain relievers, and not many of those either because she's sensitive to pretty much all medications.

    Gentle exercise, like water exercise and stretching, can help when you aren't having a flare up.

    Some people use a heating pad too.

    Some people do use certain antidepressants because it can change how your body experiences pain.

    Some people watch their diet to see if anything they eat is linked to flare ups.

    Some meditate because that can affect how you perceive pain.

    Hot tub soaks can help, or warm baths.

    More info can be found here:

    https://www.verywell.com/how-is-fibromyalgia-treated-189762?utm_term=fibromyalgia+natural+treatments&;utm_content=p1-main-4-title&utm_medium=sem&utm_source=msn_s&utm_campaign=adid-17a451f0-4740-4223-bfa6-b9e53c65982c-0-ab_msb_ocode-31642&ad=semD&an=msn_s&am=broad&q=fibromyalgia+natural+treatments&o=31642&qsrc=999&l=sem&askid=17a451f0-4740-4223-bfa6-b9e53c65982c-0-ab_msb
  • 6 months ago

    RE: Newly diagnosed & need support

    Good Morning,

    My name is Nancy, I have had this disease for over 15 years and it took 10 to get to know it and have a toolbox of tricks to be better. My mornings were the worst. I couldn't get out of bed! I needed(in the warm sheets) to stretch all my muscles (including fingers to toes) before I could stand. It took daily hydration, eating a green antioxidant diet and my meds (muscle relaxant, tramadol and savella as well as B Complex, CoQ10 and magnesium) to get my motor running. To start the day the hot shower would be added in to help the muscles not hurt so much. The water flushing help to remove debris in the muscles and in my feet (It was like walking on glass in the a.m.) So...painful. No one can understand.
    I have always worked and this was an added medicine (distraction) best med I take. But in the early years it was so hard with family not seeing my pain and teenagers that made fun of me....I would cry in hidden places so they didn't see. But I have championed this.
    I still have bad days and I still get my trigger point injections to release the muscles better (I see neurology) but I fight this every day and will not lose one more part of me.
    Pacing the days is so important. If I need to do things with the kids I don't do laundry that day or I rest and nap before I head out. But I know the limits and find resting spots or I leave for home. They know I am doing the best I can.
    I suffer at times after a full day with the grandchildren but the love and joy is so good for the spirit and I have to feed that or I will curl up and wither away.
    I will share that this was so bad I was ready to leave this world and then my first grand was born (on my birthday!) Someone at the hospital said....."God it trying to tell you something, this doesn't just happen".....well I cried for a long time privately because I had to stay and I was not in good shape. My husband brought me to a physiatrist who changed my life. I spent alot of money to see him, but I was now fighting to stay. He said ONLY WATER and plenty of it. Meat, chicken and fish, no PROCESSED foods and green veggies only for their antioxidant ability to detox me and help me heal. It changed my life. I was dehydrated and had no idea.....I am so used to all the greens that's all we eat really. Water is my favorite now, where before I NEVER could drink it. I owe him my life. I have 4 grands now, one better than another. I push, rest, plan and regroup. We live by planning our ability. You need to learn you. Get a book and jot down the triggers that get you and increase pain. Jot down what helps you feel better. I found my heating pads, recliner and hands under my hips, showering with hot water.....these all were tools for me. Dishes bothered me so I bought Corelle that are light and I can't break them dropping them. Food shopping and laundry are not done in the same day. Too much.
    I am old now, but I can remember when this all started in a heart beat.

    You can do this!!! You can be a champion.......it takes time and patience. I believe if I can do it, you can. All my best, Nancy B
  • 6 months ago

    RE: Newly diagnosed & need support

    My name is Linda R and take heart we have all had a hard time explaining our fibro collection of illnesses to family and friends.

    I've had the fibro DX for over 30 years. I was in a horrific auto accident at 16 and had head trama which a few years later gave me pre fibro DX symptoms.

    No one believed me either. Not even my doctors. I went years, until I was in college, and had a really bad flare that my doctor took notice. I was the one, with two college friends, who found my symptoms under Fibrosytis. Then the only help was a muscle relaxer and seeing a psychologist!

    Went 3 decades until I got help, real help and I found the WebMD support group. There is so much help out there.

    So Don't get disheartened. It's a flare. The pain and discomfort of 'it' WILL pass soon.

    Come back here often. Everyone here understands and supports you.

    Gentle Hugs...Linda R
  • 6 months ago

    RE: Newly diagnosed & need support

    Hi, golions2 -

    I'm sorry you're going through all this alone. With an unsupportive spouse it must be hard, and now your children have picked up his attitude too. UGH!

    I'm glad you found this forum, and I hope you'll be glad, too. The word "fibromyalgia" is scary, and the fact that no two people have the same symptoms make is scarier. I actually had a friend's wife (she's a doc) say, "I don't believe in FM," like it's the tooth fairy!

    When I was going through testing (it took 18 months for me) I kept my DH advised of everything, and I think that helped. He did a lot of research for me. You might ask yours to check out some websites for you, and it should get him more engaged and give him a better idea of what you're going through. It's not easy.

    Has your fibrodoc started you on meds? Are they helping? There are lots of meds that are available and OKd for FM treatment, so don't give up yet. Sometimes it takes a few tries. You should develop a good relationship with your doc, keep a pain journal, and share it with him/her. It will give him/her a good idea what you’re going through, and if there were any underlying stresses.

    There are a lot of resources on the web, and a good start is the National Fibromyalgia & Chronic Pain Association (NFMCPA) ( http://www.fmcpaware.org/aboutfibromyalgia.html) . I'm sure you've checked out all the info WebMD has. Many people manage some of their symptoms with supplements, meds or a combination. You'll see info about them all over the web.

    Check out this site - http://www.butyoudontlooksick.com It's a great read, and look at The Spoon Theory. It's a good way to let people know exactly how you feel. Some days we get fewer spoons.

    We'll talk again, I'm sure. I wish you the best day YOU can possibly have,
    Lou
      • 6 months ago
        Thanks for sharing these sites. I am new to this forum and already love the support and comments !!!
  • 6 months ago

    RE: Newly diagnosed & need support

    I was diagnosed many many years ago when you didn't hear so much about this awful syndrome. It is very hard for people to look at what appears a healthy individual and believe they really feel so awful...I eventually bought a book and helped explain the feelings and pain and shared with my family. After hearing other people describe how they felt they understood better. Don't let people's lack of understanding become to heavy. I am a new member to this site and have found reading other people's post and the comments so very helpful. It just confirms and reassures me that I am not imagining the daily pain, fatigue that we fibronites experience.
  • 6 months ago

    RE: Newly diagnosed & need support

    I just wanted to come back and thank you for all the immense support and advice that you've all provided me. I never knew that such strangers could so kind. Almost everybody in my real life has discounted me and doubted the validity of my condition, but I'm so glad that I have a place like this to go to when I'm feeling low. Thank you, thank you, thank you, thank you!!!!
      • 6 months ago
        Any time --- I know what this feels like
      • 6 months ago
        It's what we do. One of our nicknames for all of us is FMily. And we are!
      • 5 months ago
        We all have walked this path of dysfunction and no one understands it like us. Please use the site and hopeful that you will get good guidance and ideas to be better. We understand. Nancy B
  • 5 months ago

    RE: Newly diagnosed & need support

    I was diagnosed with fibromyalgia at age 15 (I'm now 22). It has been a daily struggle. I lost friends, boyfriends, jobs, because no one wanted to deal with the difficulty walking, weakness, pain, fatigue, and depression. They wouldn't even put me on medication until I turned 18, then I took Cymbalta for a few years but it made me gain over 30 pounds! I haven't been on prescriptions for almost two years now, and it's hell. I've tried therapy, physical therapy, TENS, orthotics, back braces, chiropractic, heating pads, baths, ice, exercise, special diets, meditation, yoga... everything out there. Talk to your doctor about getting on an antidepressant that is well-known to help with fibromyalgia pain as well. If you start to experience side effects, talk to your doctor about changing meds until you find the right one. I have to say, exercise has helped me the most. I've always continued doing physically laborious jobs and try to exercise at least a few days a week. The more active you are, the less pain you will generally be in and you won't be as stiff. I always take a warm shower when I get up and stretch while in the shower, it helps a lot. Talking to a therapist helps immensely as well, as fibro is believed to be connected to stress and therapy helps with my anxiety, depression, PTSD. I did physical therapy for awhile as well and it helped me get back on my feet after initially being bed-ridden for months. Tell your family that they need to be understanding. It might be hard for them but tell them you need their support right now. You can eventually build a support system of people who are on your team! I've heard chiropractic helps some but I tried it once and it was EXTREMELY painful. So, here is my suggested plan of action for you, as someone who has been there:
    Talk to your doctor about getting on medication. You may need to see a psychiatrist.
    Start seeing a psychologist weekly as well, or a LMHC.
    Ask your doctor for a physical therapy referral or, if possible, aquatic therapy (more helpful for fibro patients!)
    If necessary, see if you can either 1. see a rheumatologist on a regular basis to help manage your pain or 2. find a pain management clinic in your local area.
    Definitely get a back brace and orthotics for your shoes, and take Bayer Back and Body when needed.
    Move as much as possible! Try to do yoga, swim, take walks, etc. It will help with stiffness.
    Watch your diet. Keep a food diary and track your moods and pain level. Then you may be able to pinpoint dietary changes which can be made in order to manage your pain. Also, fibro often goes along with IBS so if you start to have those issues you may need to see a gastroenterologist as well.
    You will figure out what works for you. I've gone through many doctors because I've even had rheumatologists belittle my pain after diagnosis!
    Find the right doctors, the right meds, and the treatment plan that works for you. Good luck!
      • 1 month ago
        I'm new here and not diagnosed yet but EVERYTHING you all are saying is exactly how I feel, my body was really to tired to think and type to post but I'm making myself I just have something else going on with my thyroid ...4mm nodule on my right and something swelled on the left (waiting for an appointment with endocrinology and rheumatologist) all bloodwork for RA, lupus, basic thyroid came back normal.... I'm a server and a mom to 4 children the youngest 5 year old twins one with ASD,adhd1&2 severe, early onset bipolar..... and depression that is so deep you feel you could die from the pain. Fortunately my dr ordered a test he says can help him diagnose me... and go back in 2 weeks! I'm learning so much helpful tips and I suppose knowing how the future will be with healthier foods and connected symptoms.... thank you guys for all this information
      • 1 month ago
        Hi , Glad to have you here! It sounds like you have been on quite the health journey, and I hope that you will get some answers in 2 weeks. I hope that you'll find this a supportive space to share your story and connect with some of our other great members :)
      • 1 month ago
        I'm sorry to post all that on this thread I honestly just wanted to throw it out there? I haven't read much on it yet but the problems with my throat are scary but answers seem to be on the horizon....its crazy how all this just hit one day and its been random,odd aches,stings,burns,tingles swelling of the joints and veins in my hands and ankles....did this hit any of you ladies like that? thank you for the warm welcome too !!
      • Yes! All of those things and more.
        Need to vent : I went to a new Nerologist yesterday and it was a referral so
        I was not expecting it to go like "the uncomfortable freekshow meet and greet" you know when you see ANOTHER DOCTOR AND THEY JUST LOOK RIGHT THROUGH YOU and brush you off with their medical training verbiage about how and what doctors are individually trained for and how you don't fall into any one specific area so go see a pain management doctor speech! Im sorry I'm a little upset today. I didn't ask for this fibromyalgia diagnosis and I don't know why only 1 in 10 doctors even believe that it's a real "disease"! I'm tried of being yo yo'd around because no one wants to take this, or me, on as a new challenge. If these doctors really believe what they say that " fibromyalgia is only diagnosised when they can't figure out what's wrong with the patient !" I've heard that from four doctors already however, no one seems to want to try to "figure it out" if they "just don't know!"
        I live in Arizona anyone out there know of a doctor here that believes in this very real disease?
        Willing to travel !I've been suffering again these last few days again. Was looking for some caring and understanding but was brushed aside instead! Going to have a better day today and try to figure out my next move or option!?☹️
      • Yes! All of those things and more.
        Need to vent : I went to a new Nerologist yesterday and it was a referral so
        I was not expecting it to go like "the uncomfortable freekshow meet and greet" you know when you see ANOTHER DOCTOR AND THEY JUST LOOK RIGHT THROUGH YOU and brush you off with their medical training verbiage about how and what doctors are individually trained for and how you don't fall into any one specific area so go see a pain management doctor speech! Im sorry I'm a little upset today. I didn't ask for this fibromyalgia diagnosis and I don't know why only 1 in 10 doctors even believe that it's a real "disease"! I'm tried of being yo yo'd around because no one wants to take this, or me, on as a new challenge. If these doctors really believe what they say that " fibromyalgia is only diagnosised when they can't figure out what's wrong with the patient !" I've heard that from four doctors already however, no one seems to want to try to "figure it out" if they "just don't know!"
        I live in Arizona anyone out there know of a doctor here that believes in this very real disease?
        Willing to travel !I've been suffering again these last few days again. Was looking for some caring and understanding but was brushed aside instead! Going to have a better day today and try to figure out my next move or option!?☹️
      • Yes! All of those things and more.
        Need to vent : I went to a new Nerologist yesterday and it was a referral so
        I was not expecting it to go like "the uncomfortable freekshow meet and greet" you know when you see ANOTHER DOCTOR AND THEY JUST LOOK RIGHT THROUGH YOU and brush you off with their medical training verbiage about how and what doctors are individually trained for and how you don't fall into any one specific area so go see a pain management doctor speech! Im sorry I'm a little upset today. I didn't ask for this fibromyalgia diagnosis and I don't know why only 1 in 10 doctors even believe that it's a real "disease"! I'm tried of being yo yo'd around because no one wants to take this, or me, on as a new challenge. If these doctors really believe what they say that " fibromyalgia is only diagnosised when they can't figure out what's wrong with the patient !" I've heard that from four doctors already however, no one seems to want to try to "figure it out" if they "just don't know!"
        I live in Arizona anyone out there know of a doctor here that believes in this very real disease?
        Willing to travel !I've been suffering again these last few days again. Was looking for some caring and understanding but was brushed aside instead! Going to have a better day today and try to figure out my next move or option!?☹️
  • 1 month ago

    RE: Newly diagnosed & need support

    Tell your husband to look up the symptoms of Fibro on the internet. He has no clue what you are going through. It's truly frightening all this diagnosis can affect. It is a shame that people who don't have this and think it is all in your head don't find a way to support us. As far as your children you must tell them you have limitations on what you can and cannot do compare it to when they are not well and they can't play ect... I do find that streching does relieve some of the pain, also believe it or not walking can bring back some of your energy. Of course a healthy diet is also a must. My son is 35 yrs. old and we think he has Fibro also. This has to be something that your family can support you with if they love you and I'm sure they do then they will come around. Never doubt yourself and try to be strong don't give up you can do this take your time and pace yourself. Others will just have to understand BLOCK out the negative comments, That's the other persons problem!
      • 1 month ago
        In spite of what some docs will tell us - we HAVE to do the research and HAVE to keep abreast of what treatments are out there. I'm not saying we must become docs (years ago this forum was run by an MD who has FM), but we need to stay informed.

        Personally, I've been seeing the same rheumy since 2004, and I'm happy with my treatment. If you're ever NOT happy, change docs. If things change, call your doc. If you want to try herbs or something, talk with your doc. You never know what will interfere with something you're already taking. I find yoga helps with keeping me limber, but I'm noticing some poses I can't do today that I could do a year ago. *sigh*
  • 1 month ago

    RE: Newly diagnosed & need support

    Hi there is a website you can go on where everyone has Fibromyalgia it is called MyFibroTeam.com. This site you will get support and things that has worked for others. It is a blessing you can vent all you want to no judging at all. Please try it as I would not survive without it. Good Luck.
  • 1 month ago

    RE: Newly diagnosed & need support

    I am so sorry that you are going through this, but you are not alone. It has been many years since my diagnosis. I worked and cared for my children as a single parent for over fifteen years and was diagnosed during that time. My career was very stressful but I continued to work until a few years ago because I had no other option aside from homelessness. It has been stressful but life has settled into a familiar schedule that I can live with. Three times a week I attend a senior warm water aerobics class that is gentle on my joints but keeps my muscles moving and strong. I have a good friend who goes to movies, attends plays and concerts, and has lunch with me on a regular basis. When an outing is scheduled, the days before and after must have periods of extended rest incorporated into the plan. It takes balance, self-knowledge, good friends (most of mine were a gift of the water aerobics class), and a compassionate doctor. I do use spoon theory. I started the day with ten. After a movie, a trip to the store, and preparing dinner, I am left with one spoon. That will get me through a shower and into bed.
      • 1 month ago
        Just curious what is Spoon Therapy? Please explain it sounds interesting. I agree with you it's all about planning and knowing your warning signs.
  • 1 month ago

    RE: Newly diagnosed & need support

    I'm so sorry about your situation. I believe the majority of us go through the same thing as you. My husband now seems to have sympathy but all in all family and he both have periods of irritations with me. I find I'm constantly making excuses for myself. I have also been recently been diagnosed with Rheumatoid arthritis and lupus..every joint in my body hurts. Currently I'm on minocycline for RA...just started it and have to wait to see if it helps. On occasion I use ice packs on my knees and neck as well as heat. Best of luck to you
  • 15 days ago

    RE: Newly diagnosed & need support

    I understand. (I am a 62 yr old man, just for the record) I have it and there are days that I ache SO bad that I feel like I fell out of a helicopter at 500 ft and landed on a rock pile! My heart goes out to ANYone that has it.

    The first thing I do when I get up in the morning is head straight for the pain meds. Between other issues and the fibromyalgia, the pain mgmt clinic put me on Oxycodone and Ms Contin and it takes the edge off.

    I hope someday they find the source AND the cure for this so people like us don't have to live in the hell that we are trapped in. To those of us that have it, my prayers are with you all!