Diagnosed with fibromyalgia, feeling scared and lost

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

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.

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.

I've had fibro 14years ask awY

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.

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.

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.

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!

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. ☮️🩵🖤🩷🕯

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.

oh your doing so much better than me!! I have managed to eat less sugar and I this I can’t tell the difference after a few day. But I’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.

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.

Hi .. here if you need to talk ❤️

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

Fibromyalgia is different for every person and different day to day. Doctors unfortunately don’t always believe in fibro because it doesn’t show up on a test like other conditions and if the do believe many don’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 I’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. I’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.

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.

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.

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

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

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 💟🫂

I have it but I don’t have it under control I’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.

I’ve had symptoms for over twenty years and was diagnosed over ten years ago and still can feel like that…, 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).

I felt exactly the same after my diagnosis and some days I still do 😅 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!

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!