Just diagnosed with FMS

Hello!! I was just diagnosed with FMS on Monday. I've been suffering for several years with pain throughout my body with no one being able to find out what was wrong. I finally have an answer - so I think. I went for blood work yesterday and am waiting on those result to just make sure I don't have anything else brewing. But the rheumotologist stated pending that the blood work comes back negative he would definitally diagnose me with FMS and extreme fatigue.

Ok - so here I am 41 y/o and I don't know where to go from here. I'm sure the DR will get me going in the right direction, but personally I don't know what to do. In talking to my husband today, he asked me how I was feeling. I explained that I was having a bad day. Hurting everywhere! He said he didn't understand. I was fine, went to the DR and now I'm having pain. I had to laugh...um, isn't that the reason I went to the DR in the first place? I explained that I have lived with the pain for several years and just delt with it. Now, because he is aware that something is definitally wrong, he is hearing my pain. I tried to explain that FMS is different from having pain from an injury and I can't begin to explain how it makes me feel.

I don't know how to handle this. How do I get him to understand my pain. How do I explain to my children and my family my pain? I've just be going with the flow and pushing through it for so long, I'm to the point where I need to start stepping back and allowing myself to try to get better. How do I go about getting my family to be on the same page with me. To understand that yes, I have been in pain in the past, but now it's time to allow me to get in tune with having FMS and it's time to step in and help out.

Thank you for listening!


Dear Deanna,

Welcome to the group, glad to have you with us, but sorry you suffer this!

Give yourself time to digest this, learn as much as you possibly can about Fibromyalgia, as there are so many conflicting medical opinions. Reading through these pages will also give you insight as to how and when to try to present this to family and friends. These pages are filled with the compassion and wisdom of so very many, and from them you will be able to decide your first step!

We are all here for you and on your side!

Wishing you well,


Thank you!

Hello Deanna and Welcome to the group stepping back and regrouping is a good thing. Different things help different people hopefully the doctor will point you in the right direction. Families react so differently just try and talk with them show them so information on fibro the fatigue for me is horrible but I am lucky to have 2 very understanding grown children. You will find information here and your doctor may have information in his office for you to share with family. I am glad you are with us. Keep us posted on how things go.

Hello deana, I can relate to your situation. I myself have fibromyalgia and I also have rheumatoid arthritis. My diagnosis came just over a year ago and I to was living with the pain, till one day it got so bad I could not move. I'm only 34 and I to have a husband and 2 young children. It's hard for them to understand how one day your dealing with the pain and the next you have this incurable disease. There is alot of information out there. Just remember to listen to your body and do what works for you. Look up the spoon theory to try to get your family to have a little understanding of your daily choices. Wishing you all the best. Michelle

Hey Deanna, I was diagnosed not to long ago myself but I also have an autoimmune disease that is yet to be diagnosed. I think it’s Lupus and doctor is leaning that way as well. It’s not RA, but I still don’t have a positive diagnoses. Did the doctor put you on any medication? My doctor gave me Cymbalta to help with the chronic pain in my back and it has really helped me. I’m also on Mobic and now Plaquenil for the autoimmune. I’m starting to feel a little better so you may want to ask about the Cymbalta. I’ve also been told exercise is the key to controlling the Fibro and Lupus, but I just haven’t been able to get it together to start working out yet. I’ve heard yoga really helps. Diet can also be a factor with the immflamation. My problem is, I have no idea which symptoms go with which issue. Good luck with the blood work, I hope it comes back normal so you only have to deal with the Fibro.

Welcome Deana. Sorry for how you’re feeling and I can totally relate! I’ve been trying to get my hubby to understand my pain for years! He’s always saying things like " maybe if you exercise more," “maybe if you lose a little weight” (he does not think I am overweight but he just wonders if it’ll help ), “maybe u should take my vitamins, they give me lots of energy!” I’ve tried SO MANY THINGS! i tell him I doubt the answer is to lose 10 lbs & take men’s vitamins!! He says he understands but until he walks a day in my shoes he won’t. And the same for you. Your family can educate themselves on fibro but until they actually FEEL the pain they have no clue! My hbys pretty understanding and I’m lucky he is. My kids are 13 & 14 & my sons said “but mom u don’t look sick!” That’s the problem too! We look fine! It’s inside were screaming! Feel free to msg me here at anytime! Always nice to have someone who truly understands! Take care! Gentle hugs!

Hey Deanna: I was diagnosed 21 years ago, and it was hard for my spouse to truly understand. We had two small children and I worked full time, so he couldn’t understand why I needed to only work part time and for him to start pitching in WAY more than he had. I mean, didn’t I go to the doctor to make things NORMAL again? Didn’t the meds make me well? Sound familiar?

Well, my hubby was not helpful at all, so my DOCTOR talked with him. She began by saying something like, “Wouldn’t you be supportive if she can cancer?” Ok, attention received…then she went on to explain how I wasn’t GOING to get better / well. This was the NEW ME and he needed to understand and support that. So, just be aware that you may need to take hubby to the doctor to ensure understanding.

It’s not a death sentence, but it is forever. I’ve been doing this for a very long time, and I guarantee it gets easier to deal with.

Hi Deanna, So glad you are here. I joined recently but there's lots people with lots of good information so you'll be taken care of here. Ask questions, voice concerns. Welcome! :)

The “Letter to Normals” helped my family more than anything.

Hello Deanna!
I too am newly diagnosed, but living with symptoms for years.

I am both a Fibro patient and the daughter of a Fibro patient.

My best advice to you is to just print out literature to share with your family. Nothing too long at first, just some basics about the symptoms. Just explain to them that you need some time to adjust to your new diagnosis, that you need to relearn how to care for yourself.

It IS really hard to get someone to understand what you are going through. My mom described it to people as “having the flu 24/7 365” and that really does fit!

There are plenty of us who know how you feel. If your husband is listening to you now--that's a plus! Give him any information you have on fibro--husbands tend to like to see things looking official. If you have or can find a doctor who does understand about fibro, maybe ask your husband to go see the dr with you. Most of all, the two of you need to keep talking! And keep reminding him how you feel. Tell him you just need to talk about it sometimes. Men can get frustrated hearing about a problem if they can't fix it; explain to him (several times, at least) that you don't need him to fix it, you need him to listen. And remember you're not alone. There are many of us who have been where you are, and are feeling for you right now.


Thank you ALL for your responses. I'm blown away already by the amount of support I have received. I'm looking forward to reading what there is on this site and to know that you all are in the same boat makes this journey a little easier. Thank you again and look forward to getting to know you all better.

Hi, Deanna -- Thank you for your honesty and vulnerability in sharing how you're suffering and dealing with your diagnosis. I was diagnosed 7 yrs. ago and had, and still sometimes have, the same difficulty trying to get people to understand what's wrong with me when I (allegedly!) look so "normal." One thing that's helped a little bit, I think, in getting people to grasp what kind of pain this is -- how it feels, how, as you said, it's unlike pain from an injury -- is to ask them to remember the worst flu symptoms they've ever had, particular the fatigue and "even my hurts" type of body aches. Most people remember that. I think that if you can get them to access those memories of all-over body aches that just lay you out and have them imagine worse than that, 24 hrs. a day, seven days a week, it shouldn't be too hard for them to relate. I also use metaphor a lot, so when trying to explain the level of fatigue that I feel, I'll say that it feels like I'm trying to run a marathon with cement boots, or trying to swim through a pool full of peanut butter. Obviously no one knows what those things feel like, but they can imagine it, and it helps them imagine how exhausting FMS is to those of us who deal with it. I hope this helps. Be strong in spirit, but not stronger physically than you feel able -- pacing yourself is sooooo important! My kids were 17 and 13 when I was diagnosed and had to deal with their athletic, vibrant, energetic-to-the-point-of-hyper mom become someone who struggled to get through the day. I hated that for them. But we agreed that because they were older, they could handle knowing the name of this thing and what it meant. That helped enormously. Take care, and know that we're all here for you!


Maybe if you let your husband read about what others are going through ,here on this site he might understand it is not just you.I never really got my late husband to realize it,all the time.But he had something that didn't always show also so ,because at that time mine didn't have a diagnosis ,his was worse,it was it was AIDS,which he quit the meds for because of the pain of it ,nerve damage and he had degenerative disc diese also.I know that this is simulayr,because I not only meet people but catch anything they have.Then it takes for ever to get over.So good luck lots of love and keep hanging in there

Hi Deanna, I am new to this also…it sucks that I can’t do everything as quickly and as much as I used to…Taking my dogs to the park is a challenge, as my points of fibro hurt so much…My friends know that I have fibro and they see how fast i Peter out… I come out of the gate quickly, haha…not sure if you have this side effect, but, when I drive my car, the vibration is a killer for me, so we put a fat steering wheel cover over it… I loved to mow the lawn, no longer can do that…


Hi Deanna and welcome. We can all so relate to what you are going through. I have not been online lately and have missed hearing from everyone. Been having my own private little pity party the last couple of months. Was hoping to retire in January but it looks like I will be working for a couple more years if possible. It is hard to deal with FM especially when you have to constantly explain how you are feeling to everyone, family, fellow employees, customers, etc. It is hard to explain when we can hardly understand it ourselves. A lot of good advice has been handed down here from everyone. Just remember not to feel guilty when you just can't do those things you used to do. Family because they love you will understand. It most definitely is just like having the flu 24/7. I have used that definition myself to people who just don't have a clue.

Remember if possible to get what exercise you can if you can. There are so many of us who just cannot because of other conditions. I do some yoga, stretching, and ride my bike every morning, weather permitting. Just don't fall off like I did last week, lol. Many of us take supplements for many conditions, B-12 for the nerves, Magnesium for the muscles, Probiotics for digestion, Digestive enzymes, etc. Never hesitate to ask questions, we are all here to help. Dr. Mark Pellegrino has a great book on Fibro. He suffers from it himself and it might be a good book for you and your family to read if you can get a copy from your local library. I have had FM for over 30 years and now have Peripheral Neuropathy added to the mix. It is hard to tell sometimes what is causing what!

Keep your chin up!

Warm hugs,

Eileen (Book Junkie)

Hello Deanna, Welcome! I'm sorry you've to suffer so much before diagnosis. You've come to the right place though. People here are well educated and experienced with this disease.

Hi Deanna,
It is hard to explain this disease to your family. Many of us in this group have read the book, “Figuring out Fibromyalgia” by Ginerva Liptan, MD. She is a medical doctor who has the disease. She puts the details of how our body is working now into basic terms that we can understand. It will really help you to tell others what is going on. You can get the book on Amazon.com. It is well worth the $15 it costs. Hope this helps. Take care.

It’s taken yrs for my family to understand. My son thinks it’s n my head and an excuse to not do things. Like anyone would ask for this! The easiest way I explain it is feeling like a horrible flu where u hurt everywhere and are drained and weak. I live alone so they don’t see the flares just the sorry I can’t make it. My mom showed up last week during a 3 day flare and NOW she gets it !!