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beautifulDisasterxo

207d

I just was diagnosed with fibromyalgia I'm very scared, confused and lost. I was given pamphlets to read about it. but I still feel like I left the Drs office with no awnsers ๐Ÿ˜ข the Dr said I'm in a " mid range " with fibromyalgia I don't have chronic pain ALL the time I wasn't put on medicine was told to lower stress levels ( yeah that easy ) meditation, diet changes ( trying to do now ) and to just not over do it ! but I have every single symptom of fibromyalgia ๐Ÿ˜ž I don't know rather to feel happy cuz this could be the causes of most my issues or....idk ..idk what to feel !!! any opinions, advice , thoughts anything please !!!

Top reply
    • Suzy77

      14d

      Oh my heavens I understand! When I found out I have fibro my doctor was on vacation and there was three interns taking over the office one intern comes in touching up and down my back touching all of the points of pain and I'm like ready to just slap her because it hurts so bad. Then the next turn comes in does the same thing then the third intern comes in and does the same thing then the three of them come in with a doctor from another office who then looks at me and they all leave without saying a word to me mind you I'm like yelling at them asking please tell me what the hell's going on and they just walk out. My mom was with me she was like okay that's enough of this she started helping me get dressed because now I'm in excruciating pain and the four of them walk in and say you've got fibromyalgia I thought it was some kind of cancer I just lost it. And finally the female intern says oh no no this is a good thing we figured out why you're in so much pain all the time and there's no treatment for it but you can take care of it by staying calm and exercising and eating well okay I don't know if she didn't see how big I was but those are not things that I did on a regular basis. Now it's been many many many years later and I still have fibro and doctor still don't tell you anything about it you really have to hunt to get information. I think you're in the right forum by asking people what they do for me it really was finding the ability to breathe I know what things are going to set me off like if I eat a lot of chocolate I am going to be hurting like a you know what so take it slow be kind to yourself try to get some rest and just keep on talking. God bless

    • Suzy77

      14d

      Oh my heavens I understand! When I found out I have fibro my doctor was on vacation and there was three interns taking over the office one intern comes in touching up and down my back touching all of the points of pain and I'm like ready to just slap her because it hurts so bad. Then the next turn comes in does the same thing then the third intern comes in and does the same thing then the three of them come in with a doctor from another office who then looks at me and they all leave without saying a word to me mind you I'm like yelling at them asking please tell me what the hell's going on and they just walk out. My mom was with me she was like okay that's enough of this she started helping me get dressed because now I'm in excruciating pain and the four of them walk in and say you've got fibromyalgia I thought it was some kind of cancer I just lost it. And finally the female intern says oh no no this is a good thing we figured out why you're in so much pain all the time and there's no treatment for it but you can take care of it by staying calm and exercising and eating well okay I don't know if she didn't see how big I was but those are not things that I did on a regular basis. Now it's been many many many years later and I still have fibro and doctor still don't tell you anything about it you really have to hunt to get information. I think you're in the right forum by asking people what they do for me it really was finding the ability to breathe I know what things are going to set me off like if I eat a lot of chocolate I am going to be hurting like a you know what so take it slow be kind to yourself try to get some rest and just keep on talking. God bless

    • Unicorn_Arist

      187d

      It's extremely frustrating because for me it's like, I finally have answers but also I still have to work through the chronic pain. Risk losing my job every time I just can't do it and I need to go home. I am on disability leave now and I have to go back soon and I can't even pay rent and I'm on the verge of losing my job. I can't do it anymore. Money is such an issue and work is impossible.

    • Bubbles18

      191d

      Unfortunately for most of us it does yes, there is research out there you can read about it. It really does depend person to person though.

    • Pain_Warrior89

      193d

      I've had fibro 14years ask awY

      • beautifulDisasterxo

        193d

        @Pain_Warrior89 that's about how long my mom has had it ๐Ÿฅบ I'm so sorry. I do have a question I woke up this morning feeling like complete garbage mentally and physically, and I'm extremely depressed. Could this have anything to do with fibromyalgia? I also do have hashimotes disease I just my thyroid levels checked today. Waiting to hear from the Dr.

        • sorenachy

          107d

          @beautifulDisasterxo absolutely yes. All those are associated with fibro. Us fibro warriors struggle with a lot of extra crap that non sufferers don't realize. Weather changes kick me in the arse every time

    • Abi81

      194d

      Reducing sugar and processed food, improving my gut health, high strength collagen, cold showers, regular jet baths in salt, and switching from street bought to proper medical cannabis has all helped my fibromyalgia a lot.

      • beautifulDisasterxo

        194d

        @Abi81 I have reduced sugar ALOT cut out caffeine im also working on improving my gut health with all natural fiber supplement and pro botics and I also have my medical marijuana card. I take gummies with CBN in them.

    • Blessed_Jesus_Saves

      195d

      Stress can cause lots of anxiety and a loss of energy. B1 is a good supplement to take anyway, but even more critical when under stress or eating carbs. I have been eating Ketovore (less than 20 total carbs daily) for over 2 weeks now and have already noticed a difference if my sleep, pain, and fatigue level.

      • beautifulDisasterxo

        194d

        @Blessed_Jesus_Saves well I have LOTTSSS of stress ๐Ÿ˜ฎโ€๐Ÿ’จ and I'm so glad your doing better !! ๐Ÿ˜Š

    • dolphinblues

      195d

      I'm sorry you're going through this and feel like your Dr left you with no answers, only more questions. I have had fibromyalgia most of my life. It's definitely not an easy thing to deal with. There are a lot of things you can do to ease your pain. In my opinion, it is better for your body if you can manage it without medication. Once you start medication, you probably are going to be on it for the rest of your life. Things that help to relieve and manage the pain of fibromyalgia: massage (it can be painful to do, but is very beneficial), epsom salt baths, yoga or tai chi, use bio freeze (or similar) gels, lidocaine gels or patches, stretching regularly, ice packs (after activities to soothe and reduce inflammation), heating pads (before activity to relax and increase blood flow in muscles), and take natural supplements. Vitamin D3 and B complex vitamins help with fatigue and inflammation (a lot of people who have fibromyalgia are deficient in D3 and B6&12 vitamins) Arnica (Sunflower) gels or lotions reduce swelling of joints and muscles Vitamin C reduces inflammation and boosts immune system Others with anti-inflammatory properties: Green tea, garlic, turmeric, pineapple (Bromelain), Resveratrol (blueberries, grapes, dark chocolate, and peanuts), ginger, and fish oil. I hope this helps. Fibromyalgia sucks and is hard to manage, especially during flare-ups. I wish you well.

      • beautifulDisasterxo

        194d

        @dolphinblues also I am deficient in all of those I have vit d everyday but the issue I have with any b vitmans is that is causes me SERVER anxiety !

        • sorenachy

          107d

          @beautifulDisasterxo just make sure your vit d is actually D3 as that is more easily absorbed by your body. I was told that by a doctor and it has made a big difference for me

      • beautifulDisasterxo

        194d

        @dolphinblues thank you so so so much for all that information! Seriously it means a lot thank you ๐Ÿ’—

        • dolphinblues

          193d

          @beautifulDisasterxo you are very welcome! Feel free to message me anytime if you would like more information or if you need someone to vent to. I've dealt with chronic pain for over 30 years. I know how overwhelming it can be, especially when family and friends don't understand what we go through. I've heard of Vitamin B's causing anxiety, amoung other things. I would have to research alternatives pertaining to anxiety though. I can't tolerate oral forms. They cause severe nausea and cramping. I get occasional injections of a vitamin cocktail.

    • Dodo21

      199d

      I have been diagnosed a couple of years ago. Since then, I have seen a counsellor, a hypnotherapist, a massage therapist, a physiotherapist, an osteopath, 2 nutritionists and I am taking a bunch of medications ans supplements. This is what support means to me. You have to read a lot, try different kinds of things, invest a lot of time and money (unfortunately) and find what is helpful/effective for you. I managed to do all that by myself, in a foreign country with only my husband helping me. I am sure you can do it as well, step by step, day by day. Good luck!

    • TheMoonGoddess420

      199d

      Sometimes it might take awhile to find them. But there are really good doctors out there that will listen to you. My pain management specialist/ internal medicine specialist was the first to listen to me. He has me on all the correct meds to treat the different symptoms that come with fibro. I've been with him for 9 years and he takes good care of me. If you have any questions you can always feel free to message me anytime love. โ˜ฎ๏ธ๐Ÿฉต๐Ÿ–ค๐Ÿฉท๐Ÿ•ฏ

      • beautifulDisasterxo

        101d

        @TheMoonGoddess420 thank you so much. My functional medicine doctor was helping me a lot ! But recently it feels like hes starting to give up. I've been being him since late 2019... He wants to put me in low- ...I can't remember exactly the name but low somthin ๐Ÿคฆโ€โ™€๏ธ it's for people weaning off of opioids and alcohol he said it's really good for fibromyalgia hashimotes and other autoimmune problems, but my insurance doesn't cover the medicine so there $57 a piece because there's 2 separate doses with the holidays I'm struggling to afford anything ... And I'm also terrified to try any new medicine

    • BJSTREEHOUSE

      201d

      When I was diagnosed with Fibromyalgia they also diagnosed my sleep apnea. I have found over the past 24 years that my pain levels have a lot to do with how much sleep I'm getting. If I have a bad night, I will pay for it in the following days. Kind of like if you overwork muscles and they are not sore the next day, but 2-3 days later they will hurt.

      • beautifulDisasterxo

        198d

        @BJSTREEHOUSE that's crazy ! I've been sleeping in way to much and when I do I wake up feeling really off and brain fog. I felt ok all day yesterday then when it came to night time I didn't feel well.

        • sorenachy

          107d

          @beautifulDisasterxo get tested for sleep apnea but also have your Vitamin D3 level checked. That has a lot to do with how you feel and how well you sleep

    • Susie949

      203d

      oh your doing so much better than me!! I have managed to eat less sugar and I this I canโ€™t tell the difference after a few day. But Iโ€™m a sucker for ice cream haha but then I feel it worts, so I do it less until I quit and do more greens and fruits like you. Because the body needs to heal. And yes it can get better my friend is a police officer with the proper accommodations that she had to fight for legally and is suing the police. Olso she has Lupus that made her lose her toe nails (she has to put fake nails at the salon very expensive and she lost hair on top and now has to use wigs, which she hates) one of the pills that made her worse was prednisone.

    • RobertB2523

      203d

      These are absolutely natural feelings. It's a shock. I've been there. I was in denial for months afterwards myself. I've learnt not to blame myself for being stressed or down. It's worth acknowledging it. These feelings don't have to define you though. You can still find value in little things. The things that were important to you before can still be important now. And acceptance isn't the same as giving up. It's just saving your energy for where it can be more usefully employed. I'm sorry it's so rough.

      • beautifulDisasterxo

        202d

        @RobertB2523 that's my issue is accepting I have these issues and I have to change my life style to fix them. Everything just seems so hard ๐Ÿ˜ข

    • yay.yay

      203d

      Hi .. here if you need to talk โค๏ธ

    • sorenachy

      203d

      It's hard to know what to feel because so many people don't understand it, including doctors. One thing I've learned is to simply listen to your body. When you need to rest, rest. Be easy on yourself - no negative self talk because of what you should be able to do. If you happen to over do it, your body will let you know because it will take extra time for your body to heal. It will take some time to get used to

      • beautifulDisasterxo

        202d

        @sorenachy my entire life is nothing but negativity ๐Ÿ˜” but I'm trying really hard to change it !

      • yay.yay

        203d

        @sorenachy thank you for this post.

    • Doglover25006

      204d

      Fibromyalgia is different for every person and different day to day. Doctors unfortunately donโ€™t always believe in fibro because it doesnโ€™t show up on a test like other conditions and if the do believe many donโ€™t know how to help. I Fibromyalgia was severe when I got diagnosed about 4 or 5 years ago. I was unable to get out of bed most days because of pain. My digestion and memory/cognitive function were horrible. Now I have no symptoms most days. I completely agree with what everyone has said about lifestyle changes, resting when you need to, and trying to do light exercise when you can. I think medication has a time and place. At first I was too debilitated to attempt any lifestyle changes. Medication got me to a point where I could and Iโ€™m off the medication now. Exercise is a fine line. Aquatic pt in warm water is where I suggest starting. Cold can make muscles tense and increase pain. And the warm water helps. Aquatic pt takes the pressure off your body and helps build strength without increasing pain. Diet and managing stress are very important as well. As is remembering who you are and being yourself not only this diagnosis which can be overwhelming and all consuming. Iโ€™m happy to answer any questions you have and share tips on how I was able to implement things to support myself and get control of my fibro. I hope you find some relief soon.

      • beautifulDisasterxo

        204d

        @Doglover25006 I have every single symptom of fibromyalgia and then some ๐Ÿ˜ฅ I know I have to change my life style and I've already begun to do so before I was diagnosed but it's SO HARD ๐Ÿ˜ž and I'm stuck in this anxiety / depression loop right now and it's not helping any. Thank you so so so much for you kind words and advice you really have no idea how much it means to me !โค๏ธ

        • yay.yay

          203d

          @beautifulDisasterxo โค๏ธ๐Ÿ™

        • Doglover25006

          204d

          @beautifulDisasterxo lifestyle changes are incredibly difficult but they make a huge difference with fibro. Iโ€™m happy to talk to you about what changes youโ€™re wanting to make and help with how to implement them and to share what has helped me. Anxiety and depression are complex. And physical health and mental health make each other worse. Disrupting that cycle of feeling sicker is really hard. But, there are things that can help.

    • RobertB2523

      204d

      Fibromyalgia is certainly a life altering condition. However, I think a diagnosis is a positive step. Firstly, because what you've been experiencing has a name and you know you're not crazy. Secondly, because medications and treatments can become available. Thirdly, because you can seek accommodations for your condition. It is indeed a scary condition at times. The lifestyle treatments suggested by your doctor are not always straightforward to apply - in my case, they've been messy, even now. I've personally found they help. It takes time and patience to manage them. You don't necessarily get a handle on everything overnight. You do go backwards, but also forwards. It's ok to be scared and confused; it's only natural. Be kind to yourself. If you can, take a pause and breathe. I wish you strength.

      • beautifulDisasterxo

        204d

        @RobertB2523 I have mixed emotions about being diagnosed only because I don't know what to do where to start I'm just lost ... I did schedule a appt with my primary Dr and I see my endocrinologist next week I'm going to tell her and I told my functional medicine Dr to get there opinions and thoughts I also see my therapist next week so I'll be definitely telling her as well. I know I won't get a handle on it over night I'm more less scared, confused , alone and lost and I just want to be better feel better get better...but as of right now I have myself stuck in this vicious depression / anxiety loop ๐Ÿ˜ฅ I most definitely feel as if I went backwards about 20 steps ๐Ÿ˜ฅ thank you so much for you kind words and advice I reallg do appreciate it โค๏ธ

    • Red914

      205d

      I remember how emotional it was for me when I got that diagnosis. I was happy to have an answer, but scared, and frustrated too. The best advice I can give after living with it for 19 years is to take things slow and figure out what your triggers are and what your relief is. I tracked everything, diet, sleep, weather, stress, cycle, and slowly discovered what worked and what didn't. I use lots of productivity apps to track my day. It helps me.

      • beautifulDisasterxo

        204d

        @Red914 that is exactly how I feel !! I just don't know how to do that because I feel like it's somthing different every single day ... I physical and mentally CAN NOT just relax I can't tell you the last time I actually even felt relaxed ....I'm anxiety ridden 24/7 ๐Ÿ˜ฅ and i don't understand why !!! And my OCD doesn't allow me to slow I have a cleaning OCD ๐Ÿคฆโ€โ™€๏ธ๐Ÿคฆโ€โ™€๏ธ I know it sounds stupid .. tracking is a good idea ... But another problem of mine ...I tend to give up on things really easily and fast ... I'm so lost right now I can't function I'm so scared

    • 55isMe

      205d

      I agree with your doc; if you can get by without meds, dont take them. Once you introduce something into your body, your body may never go back the way it was. I had this when my first symptom was just hand tremors. Doc tried heart meds, which caused lots of problems, escalating even after removing them. Had first migraine, now have had them for 30+ years, every day!!!! Had CFS, sleeping 16 hours a day for next 2 years. Added fibro during that 2nd year. Read up well, make informed decisions. It is all guessing and that is why docs dont say much. They dont know. Specialists know the most, but mainly from experience rather than medical training. 1. Stress is huge. It is a learned science to relax, lol. 2. Exercise. Not talking crazy exercise, but rather a little bit more than what you are doing now, a little more each week. If your body says No, listen and try again the following week. Reward yourself by acknowledging you small positive steps as you notice them. Dont get me wrong, i take meds every day

    • StrawberryTori

      206d

      Oh honey. It's gonna be OK. We all know it's hard, but we manage and you will too. Nothing has actually physically changed from before you went into the doctors to after. You just have a name for it now whi h is actually a great thing because you can do some research and start to understand your symptoms. Everyone's experience is different. I'm not able to work, but I know several fibro sufferers who work full time. Just take your time, breath, give yourself a while to let it all sink in and the biggest thing I've found is getting rid of all that guilt for not being able to do this or that. We are raised to believe that resting is a bad thing, we are supposed to be on it...no sick days... make the most of the time etc but there's a huge amount of good that comes from rest and calm. It's not a race to now change everything. Change a little thing at a time so you can see what is actually helping. And always always rest whenever u need or want to. Lots of love and luck xx

      • beautifulDisasterxo

        204d

        @StrawberryTori thank you so so so much for that you literally don't know what that advice and support means to me. And your absolutely right about everything you said in that comment ! I've read that over and over again. I just don't know where to begin..

    • DragonCalmer

      206d

      First consider if you're happy with the Dr you have to treat you, if not change Drs till you find one who you can believe, trust and hears everything you're going through. My Dr is amazing and referred me to a pain specialist, we work together and now I'm on meds that are helping me immensely. I know and feel what you're going through, it's not pleasant and so much pain. One minute at a time until you can increase your time frame to 5mins, 15, 30 etc, it does work ๐Ÿ’Ÿ๐Ÿซ‚

      • beautifulDisasterxo

        204d

        @DragonCalmer I'm pretty comfortable with this Dr beacuse she is my mom's rheumatologist and my mom has been seeing her for YEARS she has alot of autoimmune problems .๐Ÿ˜” My mom told me she listens very well I just felt like I was leaving with no guidance if that makes sense? Idk I'm very confused..lost , scared feeling very alone. Not knowing what symptoms are from what ... I'm just a mess to be honest. Thank you for your support it means so much to me.

    • Susie949

      206d

      I have it but I donโ€™t have it under control Iโ€™m still learning this diet. I friend of mine was diagnosed a long time ago and through the years she was getting worse until she went to a doctor in DR that change her life. Told her to stop some pills they gave her in FL. And she eats healthy and had it under control. No sugar no bread things like that.

      • DragonCalmer

        206d

        @Susie949 So happy for her๐Ÿ™Œ

      • beautifulDisasterxo

        206d

        @Susie949 I'm trying my hardest to change up my diet , eat more greens , more fruits , I started making homemade smoothies with lots of greens and fruits in it. I've been trying very hard to cut out sugar as well. So fibromyalgia can get worse ? ๐Ÿ˜ช

        • DragonCalmer

          206d

          @beautifulDisasterxo Yes it can get worse but it can also get better with the right support ๐Ÿค—

    • Salbal

      206d

      Iโ€™ve had symptoms for over twenty years and was diagnosed over ten years ago and still can feel like thatโ€ฆ, overwhelmed, no idea what to do next, etc. Find a good Dr, maybe PT, and or any specialists. You also need a support system (spouse, sibling, friends, etc).

      • DragonCalmer

        206d

        @Salbal ๐Ÿ‘

      • beautifulDisasterxo

        206d

        @Salbal I've had these symptoms for 7 years now and TODAY was diagnosed ๐Ÿ˜ช I'm going to bring it up to my endocrinologist, functional medicine Dr, and primary Dr to see what they all say. And the only support I have is my boyfriend ๐Ÿ˜ช๐Ÿ˜ช

        • Alex1325

          195d

          @beautifulDisasterxo it took me 10 years to get a diagnosis and that was 4 years ago. It's a very scary road to go down but at least now you have a reason for the pain. Fibromylagia is a monster and affects the whole body in so many ways. Sometimes at doctor clinics they will understand what you're going through and some won't have a clue. Some days you will have minor symptoms and other days it will be hell. I know that this sounds very scary but you have a community on here of many who are fighting the same battle as you

        • DragonCalmer

          206d

          @beautifulDisasterxo ๐Ÿ’œ๐Ÿ’œ

    • Bubbles18

      206d

      I felt exactly the same after my diagnosis and some days I still do ๐Ÿ˜… but it just takes time, you will learn and figure out what makes your symptoms worse and what you can do to manage them better. This community will always be here to listen and answer questions. Definitely read all the pamphlets and do any of your own research if you want to! There are lots of communities you can join on social media which can be very helpful! Please feel free to message me with any specific questions you have, I will be happy to try and help!

      • beautifulDisasterxo

        206d

        @Bubbles18 it's such a scary , crappy feeling !!!!! Like I don't know where to start i don't know what's what ! ๐Ÿ˜ช Thank you so much for the advice I really do appreciate it more then you know ! I do have a question...over time does fibromyalgia get worse ??

        • Bubbles18

          22d

          @beautifulDisasterxo I am so sorry I have only just seen this, had a bit of a time ๐Ÿ˜… unfortunately for most people fibromyalgia does get worse over time but it's different for each person and there's lots of things you can do to help yourself along the way

        • DragonCalmer

          206d

          @beautifulDisasterxo ... It can ๐Ÿ˜ข

    • qveenofthecastles

      206d

      Anxiety causes a lot of issues so that makes sense. There are a hundred different treatment options for anxiety you just have to find what works for you. Your mental health is also directly associated with your gut health so that's why he called for a diet change. But I doubt he told you that...I would recommend eating whole foods - nothing processed or synthetic ingredients. I recently started taking glucosamine for my fibro, I'll let you know how that works!

      • beautifulDisasterxo

        206d

        @qveenofthecastles I've been trying for 7 years to figure out the right treatment for my anxiety ๐Ÿ˜ฅ and she actually did tell me that I've had many Drs tell me that. The issue is I'm VERY VERY VERY picky ๐Ÿ˜• I'm now taking a all natural fiber supplement that has been helping a lot ! And starting to drink homemade smoothies with lots of fruit and greens in it ! And the Dr didn't want to put me on meds 1. Bcuz I'm already on alot 2. Bcuz my fibromyalgia is " mild " right now and I don't want to be put on any more meds I would rather fix things all natural.

      • Bubbles18

        206d

        @qveenofthecastles I take glucosamine sulphate vitamins and I feel they do help me, vitamins can be a great help with fibro!

โ˜ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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Staying hydrated, eating anti-inflammatory foods, and movement such as stretching or soft yoga can help manage fibromyalgia symptoms. It's not a very well understood disease, but it is believed to have autoimmune properties. There are prescription meds that can help, but also over the counter options like supplements and guiafenisen (an active medicine in Mucinex). You could also try chiropractics. One of the most common problem areas with fibromyalgia is the "coat-hanger phenomenon" which refers to pain and stiffness in the neck/shoulder areas. Topical pain meds in this area may help. Healthy eating and exercise can help, but you also want to balance what you do with how much your body can handle.

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