Welcome to the group, Grace.

Ah, the old "but you don't look sick" argument. It's something that every person with an invisible affliction can commiserate over.

You've certainly come to the right place - I think about everyone here can relate to everything you're saying. I've heard people say that they think they'd be able to handle the pain if only they could cut out the fatigue.

Your diagnosis is still very new, and all these feelings make a load of sense. Anyone that gets a diagnosis for a chronic condition goes through a grieving period. I've had symptoms for ten years and a diagnosis for five, and I still have the occasional day where I just get mad and sad at it all.

And - wow, three different types of meds in six months? Physical therapy started and stopped again already? No wonder you'd feel like nothing works, since nothing has been given a fair shake to work. Most meds are tried for at least three months, since levels in your body have to shift to a new normal. I was in guided physical therapy for at least two times a week for nine months, and I can never give up my exercise regimen lest I get far, far worse. I also had multiple bouts of cognitive therapy and did a mindfulness course to help myself deal with the fact that I can't expect my life to be pain-free.

If your rheumy thinks it's wise to throw treatments at you and discard them when they don't work instantly, I think you'd be better off with a different one. Fibro takes time to manage. Some people use medication, others less so or not at all, managing it instead mostly with restructuring their life so as not to have schedules their bodies can't keep up with.

Like I said: I think it's great that you made your way to this group. There are so many experienced people here willing to share their personal insights and give advice. Give yourself time and the space to grieve - it makes sense that you'd feel down in the dumps for a bit after being told your life might not happen like you thought it would. It will lessen and then you can truly focus on getting your life sorted.

Hello and welcome! I see Sonya has greeted you and given you the good advice we give all our new friends. Our go-to book is "Fibro for Dummies"< as much for others as for ourselves, and I was 25 at dx. I'm now past 45. It's possible to live and live pretty well and get a good life *with* fibro.... and you'll always have some grief issues, it's the nature of having chronic issues or pain (I have epilepsy, too, went through it with that), but it's okay. We all still have our denial-anger-acceptance cycles, and it's natural.
Big purring welcome from the puma, and nice to meet you!

Welcome Grace. I got Fibro after the birth of my twins in 2010. It took over a year before I got my diagnosis. I have progressed into several autoimmune diseases since, but primarily Lupus and fibro affects me most and caused peripheral neuropathy. My husband still makes the comment that I look fine. It's very hard to get other people to understand our condition. You came to the right place to find people that understand and that can help you not feel so alone. Believe me, you are not alone!

Welcome to the group Grace! I agree that maybe not enough time was allowed to let the medication work. The longer a chronic pain cycle continues the harder it becomes to manage or stop.

Are you taking a medication for sleep? Fibromyalgia interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain and cognitive issues. You should have a sleep study done particularly because of your fatigue issues. Managing the sleep issues associated with this complex illness is critical.


I'd seriously consider getting a second opinion from someone else too.

Join us on morning check in hosted by our lovely and popular spokesmodel Leo. You are not alone.

Thanks all for the welcome and advice. Wow- I have nevee considered doing a sleep study! That could help me so much! No, I am not taking sleep medication. And I never thought about waiting longer for my meds to kick in... I really feel unhappy with my rheumatologist now. If she really cared about my wellbeing, she would be a more patient and try a little harder to help me.

Fibro for Dummies sounds great. I am ready to purchase it, but had it made a big positive impact on many of you? I just don't want to page through another cheezy fibro book with watered-down descriptions that are no help.

"Fibromyalgia for Dummies" is our go-to book. It is written by a rheumy. We recommend it to everyone and their friends and family. There are many aspects to this complex illness that are not even mentioned during a doctor's visit. It will give you both conventional and alternative ways of handling this illness. Being well educated on the subject is your best defense against uninformed/bad doctors. Available on Amazon.

If your rheumy is not even covering the basics like a sleep medication then see someone else. You can call your local hospital and ask for the physician referral department. See if they can match you up with a new doctor that has an interest in Fibromyalgia (FMS). It could be another rheumy, a neurologist or a pain management specialist. Not all doctors are created equal. Some of them don't even acknowledge that FMS exists even though it now has its own diagnostic code. Most of us have fired at least one doctor since being diagnosed. Get your records and copies of any recent blood work to save time and money when seeing someone new

In the interim, you could try an OTC to help you with sleep. I use Hylands Calms Forte (CVS has it). Some people like the supplement Melatonin. We are all different. What works for me may not help you. That is one of the reasons this illness is so damnably hard to treat. If you decide to try either of these items, read the labels, be clear about side effects and follow the directions.

Get a sleep study organized and done. That could help pinpoint more issues that need to be addressed.

I hope that my comments are helpful. Take care.

Hey. My name is Danielle. I, as well, have FM and was diagnosed a few weeks ago. I am 24, so it's nice to see that there are other people with the same condition, that are my age. I am new to this whole FM thing and support groups, so i thought i would reach out and see if there was anything i could help with. I am always available to talk :)

Aloha. Welcome to the group!
I was dx-ed with FM at the age of 23, but I'm sure I had been dealing with it for a few years prior to the doc figuring it out.

Hi Grace, I am Carla, . I have fibro, my daily sx for 12 years, and it has progressed. I was a Nurse, and NP but when it is your own body, it seems different. I understand so much your frustration. I live also with a man that used to be my boyfriend but then domestic violence started. He has a brain injury, but can turn on the charm to anyone but me in one second. It is very hard as he acts like I am his slave. He cannot drive right now, and his favorite phrase is "you need to..." and he also says " you dont look sick"...uggh! I am trying so hard to get out of that living situation but on disability it is hard to live alone. Regarding you, yes I agree with others, get another rheumy, get a sleep study, try melatonin at 1mg up to 3mg for sleep, as most of us are lacking in it, otherwise, check with whoever is your doctor. But melatonin is otc. Some days your body will feel worse, then better. Usually foggy, or humid days with high barometric pressure makes us feel worse. Neuropathy comes with it usually but as your rheumy txed you so quickly, make sure she did not miss checking other conditions like lupus or lyme disease. Thanks to the rest of you for reminding me about Fibro for dummies, I have read part of it, but need to get my roommate to read it, and then re read it! I really need all your support too, it is good to be back on!

Sinus issues & bladder issues are also symptoms of Fibro. I just read your post in Leo's Monday morning check in. I have Fibro & have had many many sinus infections & an almost constant slow drip from the left nostril. The bladder - achey feeling like a bladder infection but it isn't. Oh, what fun. I hope you feel better soon. Take care.

Hi Grace-I'm sorry you are suffering so at a young age. I was 33, and just married when I was diagnosed in 1993-when nobody knew what it was. Everyone has to find what works for them, and don't give up. fibrohyg

Hi Grace! I know exactly how you feel. I'm 24 years old and feel like I'm about 85 due to the debilitating fatigue. My neurologist started me on vitamin B12 injections monthly back in March and it seems to help a little. I've also been taking ritalin for about a year now to be able to work. The only problem is it becomes less effective over time and has some bad side effects. I just started taking low dose naltrexone last week and I'm beginning to notice some change in my energy level and mood. It's been very gradial so far bit I'll take any improvement at this point. Hope this helps!