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I don't know what to do....

Jun 29, 2016 8:50 PM

So I have a recent fibromyalgia diagnosis that I'm not taking very well, and symptoms that don't seem to get better no matter what I do. Someone please help!!!

Jun 29, 2016 9:33 PM

What meds are you on?

Jun 29, 2016 10:23 PM

I had a really, really hard time with my fibro diagnosis. It felt like a life sentence to pain and misery. I'm sure you've noticed how much bad news is posted online about fibro related suffering. Stop reading it. You already know you hurt. Look for the things that have helped other people and start keeping track of what helps you, and what your triggers are.

Right now you probably feel like everything is your trigger. Your body needs time to recover. Give yourself permission not to accomplish anything extra for a month. Do only that which is absolutely necessary for survival. And then rest. Your body needs it. Right now you're living with the consequences of not listening to your body. You've got to be mediocre for a while. Slow down and really learn to listen to your body.

Then find a good doctor. One who listens and is willing to try outside the box therapies. There are currently only three prescription meds approved to treat fibro, but there are a lot of alternative therapies that make a world of difference for fibro patients. I'm doing bio-identical hormone replacement in conjunction with a prescription. It has helped me a lot.

Finally, finding people who understand has really helped me. I was deeply depressed at the beginning of this journey. It felt like there was no hope. But there is! I may never be exactly the way I was, but millions of people successfully manage fibro every day. With effort and patience, you and I can be among the success stories.

Hang in there. It does get easier to deal with.

Jun 29, 2016 11:43 PM

I'm on a cocktail of tramadol 100mg, oxycodone 30mg and morphine 60mg. You would think such strong meds would do the trick, but I might as well be taking candy for how well it works. And FatiguedFighter I think dealing with the diagnosis alone has me in a constant flare. I am so grateful I found this app though. I feel like no one here will judge me or get tired of me "complaining" about dealing with my lifelong illnesses that have no cure. I can't put my finger on it, but something about the app gives me peace that I've been struggling to find since my diagnosis.

I hope I can come to grips and accept my new reality so I can stop stressing over it because I know that's not helping me right now.

Jun 30, 2016 12:56 AM

Hey Deja, sounds like your doctor is prescribing pain meds that only provide temporary relief. I was told that cymbalta might help and my doctor prescribed it without me asking. I also hear that lyrica works for SOME people but that medication is normally taken for neurological issues like epilepsy. Cymbalta is also an antidepressant, it helped my fibromyalgia pain after a week, although it took awhile to adjust to the medication. I can function much better now and with a lot less pain, but I know these medications don't work for everyone. Stay active and ask your doctor about these medications if you'd like to try something preventative.

Jun 30, 2016 1:39 AM

Being diagnosed is definitely rough. Firstly, I know you must be in a lot of pain and I want to remind you that you are not alone in this. It took me a while for the news to settle in and not feeling like shit. I felt very depressed and alone and like my whole life had to change. Our lives don't have to change- we need to make adjustments. I tried different things and asked around. These support groups helped me alot. My GP told me that with fibromyalgia, a lot of GPs and Rheumy don't fully understand fibromyalgia and they learn more because of people like us having discussions and asking questions. You are not alone in this, don't give up. You are a warrior now. Gentle hugs x

Jun 30, 2016 8:20 AM

Savella is the third medicine approved. A lot of people find relief from these meds. I tried two of them. The first did nothing. The second has helped a lot.

Jul 01, 2016 10:01 PM

I'll look into those meds and see if any of them help. I know there is no time frame on coping with anything, but I just feel that by now I should be at the point of acceptance and moving on with my life. But it's like I'm stuck in time....

Jul 01, 2016 10:06 PM

I get how that feels. I usually just do my best to take care of my body in my free time, and just keep myself distracted the rest of the time. It's not a long-term solution, but doing things to keep yourself happy is the most important thing. That's even what my doctor told me. :)

Jul 02, 2016 8:26 AM

DeJa, although it feels like your world has come crashing down, it won't always feel like this. Everyone above has given great suggestions and advice. We have all been where you are. And it does get easier to cope as time passes.

Let me share a little of my Fibro story with you... Mine started in 2007 but wasn't dx until 2012. My doc tried various antidepressants, to which I had adverse reactions to all. Then he put me on cymbalta, and it was great, for six months. For the next 3 months I began going through all kinds of changes, mentally & ever increasing pain to the point I developed suicidal thoughts. My rheumy doc immediately weaned me off because again I was developing adverse reactions. My psych doc did a saliva test to check my meds metabolization and it showed I have 2 genetic defects; MTHFR gene causes me to not metabolize & absorb B9-folate, and the other defect causes me to Overmaster & absorb benzodiazepine meds (problems with so many meds I'm not able to take). My rheumy doc didn't want to treat my Fibro & sent me to a pain specialist who put me on tramadol daily. But taking it daily was adding to my confusion & lethargy/sleepiness, so we cut it back to flares only. I have OA and take Tylenol arthritis daily for it, along with using voltaren gel for joints & spine. As time progressed I kept telling all my docs something else was going on. From coincidental findings on a chest CT scan, we found I have a damaged thyroid, and with tests is confirmed I have hypothyroidism. Then I developed this awful ready inside my mouth that was misdiagnosed by my dentist & Pcp doc. After 4 months I went for my rheumy follow up and she sent me to an ENT doc for a biopsy. It came back that I have Sjogrens disease. Two weeks after starting the plaquenil for sjogrens I could feel an immediate improvement in my all over pain, muscles, joints, bones, & trigger points. Because of my pain med allergies, the sjogrens med has been a tremendous blessing! I found out on here, from others who have Autoimmune diseases (AI) that it's very common to develop others once you have one. I've been told I have Raynaud's in my hands now too.

From reading others posts, and listening to suggestions my psych counselor, I've learned to relax my body when in pain or when stressed. Relaxers muscles hurt less. I can't do an Epson salt soak except on my feet or hands, because I can't get in & out of a tub. I listen to relaxing music or nature sounds before bed, which helps me drift off easier & sleep better. I also take melatonin if I'm having trouble falling asleep; muscle relaxers for RLS & hypnogogic jerks/leg cramps; Tranxene for anxiety. Because of suggestions here, and my labs values being low, I take magnesium, vitamin D3 & a multivitamin plus folate supplements. Due to multiple other chronic issues I have, like dizziness, imbalance, I now use canes, Walker's & scooters, whatever is needed.

One of the biggest keys to coping is learning to listen to your body, learning to identify what you can or cannot do, what helps or hurts. You will have things you need to adjust to do, but you don't have to give up completely. So let's say there's something you really want to do, like go to the beach with friends. Rest the day before, and take rest periods between activities during your trip, then rest when you get home to recuperate. Pace yourself every day, resting between activities. And as you go through learning your coping methods (each of us are different; no one thing works for all), you will need to go through the grief process on how your life has changed. That alone took me 4 years, to accept my life will never be the same. But I refuse to give up, even when I'm dealt another blow (flare or new dx or procedure). I believe trying to focus on what we do have, rather than what's been taken is a good shield against the depression I battle daily. And my faith is a great help too. Positive thinking in the midst of a battle is hard, but with this community it is so much easier. I thank God this community was created and I found it. Though I hate knowing others suffer so, it helps knowing I'm not alone and others really do understand.

One last suggestion is to have a good team of doctors, who communicates & listen to you as walk as working together for your best coping plan. We all have good, bad, & really ugly days. And there is always someone here to help you through. And we're love sharing good things too; laughter really does help. Hugs love & prayers as you work your way through to finding what helps you cope best! 🙂💕🙏🌼

Jul 02, 2016 8:27 AM

I hope these links can help you. 🌞

Jul 02, 2016 11:35 AM

Thank you for sharing your story and I'm so sorry to hear how much you go through. It makes me feel like I need to just suck it up and stop feeling so sorry for myself. And I'm really stuck in that awful place right now. I'm so angry and emotional all the time now. I just want to stop feeling this way but it's like I can't and I can't do anything about it. I hate this.

Jul 02, 2016 4:57 PM

For me knowing what was wrong was half the battle. It was hard to accept and find I go on this disease.
I find that lyrica and cymbalta help along with acupuncture and going to float in Epsom salt water. We have an excellent place called Nashville Floats. Perhaps you have a place near you or a garden tub to soak in. Magnesium tabs, Extra strength Tylenol 2 tabs every 4 hrs and ibuprofen 200mg 4 tabs every 4 hrs and ice on the body part that has Inflammation helps me alot! I too take tramadol for pain 3-4 times a day and a muscle relaxer 2-3times a day. But after I float Im pain free for 24-48hrs!
I am going to a psychologist for Acceptance and Compassion Therapy. I have always helped others and put their needs before my own my entire life. It was very hard to pace myself, admit I felt pain to others esp my family who live out of State, aNd put my needs first.
I need a day of rest after driving 2-4+hrs for my work as a Case Manager. If I clean my house I can pain for 3-4 days . It is a hard lesson to learn.but with meds and rest I feel I can do all the things I want to do.
I wish you painfree days. Pace and love yourself! Lean on your friends and family.

Jul 03, 2016 5:17 PM

DeJa, don't feel that way. No matter how many or how few issues each of us deal with, the important fact is we all need support. I'm 54 and my first medical issues started in my late twenties. I can say honestly it didn't seem so bad, until the past 6 years when so many things began happening all at once. Trust me, I feel blessed when I hear others stories. But you want to know the one thing that's important? If someone has gone through it then they have experience to share. We learn a lot from others that way. That's how I've learned about many things here. So don't ever think that because you have less issues you shouldn't complain. Complain all you like honey because we are all learning how best to cope. Once you get the anger and despondency out, over losing health to illnesses, then you'll start recognizing coping methods that help you through it. (((Hugs))) & prayers!! 🙂💕🙏🌼

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