Hello, My name is Amber I am 31 and just got diagnosed. As I’m sure with many of you it wasn’t a great experience to this point. My family doctor hasn’t taken the pain I’ve been in seriously so it has taken A long time to get referred to a specialist but it Finally happened. I was so excited thinking finally someone who would help me. Boy was I wrong lol. My wife and I went to visit this new dr. He was rude from the beginning, no hi, no how are you nothing. Just “why are you here” he went over the test results from my blood work, MRI, and X-rays. Then examined me with very little talking. After he told me I had fibromyalgia. My wife asked how we came to this as I had already been told it was a bunch of other stuff (overuse of muscles at work, arthritis, aging lol) his response was “what do you want me to condense down 15 years of medical training for you?” Wow. No just please explain to me so I understand. I had already suspected fibromyalgia before this appointment as had my physiotherapist but still it’s nice to hear from a doctor how we know it’s this. He gave us a little information then handed us a pamphlet to read. When asked what can be done to help the pain he said nothing really. I was told I could try anti-depressants, but I am already on seroquel for anxiety and have been trying to go off for a year (that’s another reason we suspected fibromyalgia, when I started lowering my meds the pain started getting worse and it is a med that can help with the pain). But it’s hard to function on it and I work with children with special needs (mostly kids in wheelchairs who involve lifting and kids who have violent outbursts, so I need to be able to function and my meds make me drowsy and distracted). He said the only other thing is meditation and that truthfully now that I had a diagnosis for why I’m in pain I would be able to handle the pain better and that it probably wouldn’t bother me much anymore. I thought finally having a diagnosis would make me feel better but I feel worse. Way worse. At least before I had hope something could be done now I feel like there is nothing I can do but put up with the pain. Any advice anyone has would be much appreciated, did anyone else feel so hopeless when first diagnosed? Anyways thanks for listening 
Hello Amber,
First can I say welcome - you are in the right place. Second, please don’t be scared, there are many of us here in the same boat, and we understand! It is often mixed feelings when you finally get diagnosis, relief cos it’s got a name, then sorrow when you realise this is your ‘new normal’. It can take a while to accept this, but if you do I promise it will get easier. I have a few sayings I like, ‘get better, not bitter’, and also ’ being in the battle is hard, get out of the battle, you won’t win!’ There are lots of things you can do tho’, and I hope other members will weigh in. Pacing is good(listen to your body), Epsom salt baths, meditation and relaxation, Yoga, Thai Chi, gentle stretching, swimming - there are a lot! That’s not to mention meds that some find helpful. Also maybe get counselling, is CBT available to you? Practising Mindfulness and ACT can also help. I wish you well. Take care, Anne
Hi Amber,
This is a great website so keep coming back. It is annoying in that you have been diagnosed with something but unfortunately there is nothing that will cure it. It is a depressing and aggravating thing to have. You don’t look sick so therefore you must be fine right? Wrong! We know different. We are in pain all of the time and exhausted! My husband does his very best to understand. He has read up on some things on the internet and he is VERY supportive. He is the only one who sees me day to day and can tell the difference in my “good” days and not so good days. He is very helpful on my really bad days.
Just hang in there. Keep exercising to low impact and get your sleep at night. This is something that there is no real answer for. I know some foods trigger my flare ups so maybe keep track of what you are eating. You will see a pattern and know to stay away from those foods. Each day is a battle but there are people out there who will listen.
Take care and keep in touch!
hopeful1
Hello AnneV,
Thank you for replying. It’s nice to be able to talk to others who know what it’s like. I will look into some of those ideas you gave, I started yoga yesterday, hopefully that will turn out to be helpful 
have a great day!!!
Hopeful2,
Hello! It’s good to hear you have a supportive spouse i will have to look into the food thing to see if that has any affect, that would make a lot of sense!!! Though not sure I can give up my treats lol a lot of the people in my life think because there isn’t a direct cause to the pain that I’m just making it up, it’s frustrating. Hopefully though with a name for it now they will start to understand a bit. Thank you for talking to me
Hello Amber,
I only recently started yoga, too, so not sure if it will help yet! The teacher is very good, tho’ she adapts it for me if she sees me struggling. I love the relaxation and the breathing tho’. Let us know how you get on.
Take care, Anne
I do a food diary. I keep track of what I eat each day, what I did and how I felt. It helped to narrow some things down. Patterns formed and I discovered some things to stay away from. I like treats too but I have to try and enjoy them in small quantities and not as often. I am learning that some things just aren’t worth the pain. I cannot have processed foods. I am recently discovering that things like sweet and low are dreadful. You kinda have to do your own testing. Do the diary and then go without one item for a week or so and then try it again on a day when you are feeling better than others. It’s a pain in the butt to do but it is helpful in the long run.
Hopeful2
Hello, I am sorry to hear that you had what is a common experience for some of us. Luckily, now you are here and we can all help to take care of you too. Many people with fibromyalgia develop very serious intolerance to gluten (please read up on it… Many symptoms are not obvious but it’s likely you are sensitive), dairy…And other proteins. This is related to problems with IBS also. It is not uncommon to also have problems with chronic UTIs as well. I have found that eliminating foods my body can’t process anymore, extra sleep, stress reduction, and massage have relieved my pain. Yes… The pain returns… But temporary relief is a godsend. I have not tried it yet, but I plan on doing yoga and meditation. These activities are known to aid in changing the pain feedback loops that our brains are stuck on which spasm our muscles and cause lactic acid build up and pain.
I am so very sorry you had to come into this family of fibromyalgia.
It is a hard life, and not many answers. Especially the fact you are so young, and you have poured your life into helping others with disabilities.
But welcome to our family. Although little helps physically, if you can keep your spirits uplifted, it is the very best advice I can give you.
There is no miracle pill that will stop this. Some will help a little, others will be a nightmare.
I would suggest you first of all find a compassionate doctor to work with. Someone who knows your plight and will understand your frustrations.
This website is one of the best I have found, and come here when I get down, and am uplifted by others who understand.
You will go through a grieving process, almost like a death. In the end, you will realize the person you once were is gone. But the person you are now has a lot of great abilities, and is caring. And although except for some miracle, this is now your life.
Dealing with pain, fatigue, depression at times and many other things.
My biggest advice to you is, do what you can, but pace yourself. If you over do it, you will go into,a,flare up and end up in bed for,a,week.
Try to stay positive, and learn to take others advice with a grain of salt.
Take care of yourself, and let others around you understand you. Let them know you aren’t looking for pity, just understanding, and you hope the close family and friends will educate themselves a little bit as to what you are living with. This support helps.
Gentle Hugs
Melody
IBS, I had this problem for year before diagnosis. With me it happened to be the amount of carbs I was eating. So I had to back of bad carbs. That is something, if you have or start having this problem you might want to try, along with the idea of Gluten.
Hi my name is Aoife I am new to this site. I was diagnosed at 17 tho Im not newly diagnosed and have lived with this condition for some years now I’m still afraid. I have lost the feeling in the left side of my body this being the second time it’s happened to me I’m feeling numbness and tingling sensation in that side of my body. Along with fatigue loss of appetite and anxiety not really wanting to leave the house because I just can’t deal with facing people. Now living in sunny Spain I don’t even want to lay out in the sun. Only today I had to quite my job because my body just cannot take it. Has this happened to anyone else? My doctor told me it can be a rare symptom and will possibly never happen again but yet it has
Thank you x
I can totally relate. I have had for more crappy Dr’s then good one. Luckily right now I have a good team. I have a primary Dr, a physical therapist, massage therapist, counselor & heart Dr. And the heart Dr is because I literally stressed my self out to the point that I damaged my heart. You have to take care of yourself! I’ve noticed that clean eating really helps keep so of the inflammation down. If I eat something like pizza I have a horrible flair up. Sleep is super important. I take 2 Trazodone and 2 benadryl before bed. I use to get 0-3 hours of sleep everyday (due to pain) and this went on for months! I thought I was gonna go crazy lol. Stretching is also super important!!! If I dont stretch for an hour a day, I can’t move and my husband has to help me shower. I have pulled more muscles then I can count. I know I am a pretty extreme case, but this things are important for anyone at any stage. Also a big dont is narcotics. I had a Dr that put me on pain meds & it was a huge mistake. 1) your body gets use to them so you end up on max dose. 2) other drs dont take you seriously & think your q drug seeker. 3) going off them really sucks. I really do wish you the best of luck.