My name is Maddie and I am 29 years old. In 2009 I had mono and my brother had H1N1 twice. Shortly after that I had severe stomach issues, fatigue, body pains, numbness, stiffness. After a ton of doctor appts I was diagnosed with Celiac Disease by blood test. Changing my diet helped some but shortly after that the symptoms came back. I had my gallbladder out in 2012 and that helped my stomach issues but not my body and sleeping issues. In 2013 i was diagnosed with FMS and was put on a lot of unnecessary medications such as heavy pain killers and muscle relaxers and then heavy duty medication my brother was on for bipolar disorder. In 2015 I got a second opinion and had a sleep study. I was diagnosed with hypersomnia that could eventually turn into narcolepsy. They gave me the medication for someone with narcolepsy and they did the job but made me very sick and not myself. This past week I went to the rheumatologist again to get my symptoms under control and he basically told me I was crazy and to buy a book and hopefully that’ll help me. I’m here just to get some input on what I should do next since none of the rheumatologists in the area treat fibromyalgia. Talking to my friends about this is also pointless because they see me as this fun, busy person who is hurting on the inside. I’m also trying to cope with this and continue my job as a nail Technician, makeup artist and hairdresser. I hope to make some friends here who understand me.
Welcome to the group. Some internal medical doctors treat fibro. You can google fibro drs in your area. Most do treat with an antidepressant and muscle relaxer. Physical therapy can help. I prefer aqua therapy. Yoga is also helpful to some. My Dr sends people to see a therapist.
Thank you for responding to my post! I’m trying to get my internal medicine Dr to treat this for me. Until I can get an appointment with her I’m doing some walking and getting massages (perks of working in a spa and getting 50%off). Are there any meds that they give for this that aren’t heavy duty where you can still work?
I worked for many years doing to go and massage. I took ultram as needed and amitriptyline. I was taken of work due to lupus complications. Some times it takes a while to find what works best for you.
Yoga my phone has a mind of its own
My family doctor put me on Lyrica, 75mg 2x day. She’s increasing it to 3x day because it seems to wear off after 5-6 hours. It makes me feel a little funny in the head in the mornings, but not too bad. People onlinesaid that passes after a few weeks. I’m taking Lyrica, and low dose of flexeril, 5mg 2x day. I’m also in pool therapy. I believe it is helping. The pain in my arms goes away when I take it. The pain in my lower back and spots in my spine doesn’t go away, but it’s dulled down enough that I can walk and go to work. I’ve only been on it a week but I have high hopes. I would recommend finding a family doctor who is kind and familiar with FMS. It took me a long time to find the right doctor, but it was worth the wait.
Medicine really messes with me so I hope they won’t be putting me on anything. I’ve been doing massage and yoga and both have helped. I just got blood work back and my ANA bloodwork came back speckled positive. I have an appointment at the end of the month to go over it so hopefully I get some answers soon.
Welcome Maddie!
I’m Dave and I am always looking for new friends. If you get a chance you can look on the site for my introduction as I feel like typing it would result in a 250 page book that you’d probably fall asleep to lol. I am very sorry you have been dealing with all this. My partner Mike recently was diagnosed with Celiac Disease and it has been a challenge however we have been learning as much as we can with the disease. He had the same issue where the eating habits were changed and he was good then some of the symptoms came back. There is SO much food and liquid out there that has gluten. If you haven’t already see a Nutritionist would be one recommendation. I have learned with CD the fatigue, sleep, pain, e.t.c is normal. He tries to go to the gym but he struggles. I can’t imagine if he has Fibro as well. He almost had his gallbladder taken out. I myself had a couple of transplants and was did me in more is the Fibro. I am on pain meds. I have stopped a long time ago taking Muscle Relaxers because the name relaxer is a misconception. They are basically sleeping pills is what I feel like they are. I am on a medication called Baclofen which deals with Muscle Spasms but it actually helps in the idea of the name “Muscle relaxer”. My mother is on it for MS and it helps her quite a bit too.
I had a sleep study and found out I have very Chronic Sleep Apnea. Apparently there are 2 different kinds of sleep apnea. Obstructive and Central. I have both. Obstructive is what most have but Central deals more in the brain. Unfortunately the machine to fix Central doesn’t fix mine so I still have sleep issues.
You need a new Rhuem. There are docs out there that don’t believe the disease and if he/she does and isn’t helpful thats just wrong. @rrkaren is having the same issue with the area she lives in. I was just replying to her comments in another thread. If you can, read my novel there.
I don’t share much detail with my friends either because unfortunately they don’t know how to react but they do sympathize. Are you explaining to them what your dealing with? Staying busy is the best thing you could ever do for yourself. The less busy you become the more Fibro takes a hold and makes you more miserable. Exercise, diet and all that crap is helpful. Clearly you can tell my enthusiasm for both LOL. Again, sorry you are dealing with this, but you’ve come to the right place. 
~David
Hi Maddie,
Grappling with the Fibro diagnosis is tough – I’m still ranting and fuming and trying to deal with it myself. I’d say ditch that doctor who told you to “Buy a book”! There’s more supportive docs out there, you’ve just got to find them. I take tramadol at night only sometimes for the pain, as it makes me fuzzy and doesn’t help with my balance/dizzy issues. Most of the time, it’s just Advil or Tylenol during the day. I also take a trazadone for sleep, which does seem to help, too. Other than that, I’ve been hesitant to try any more pharmaceutical cocktails for the Fibro stuff. I’ve been on antidepressants, muscle relaxers, anti-inflammatories and they didn’t do anything for me. One thing that has helped has been reclaiming my life (quitting the bad job, moving, cheaper mortgage/rent) from all the stuff that was weighing me down. I know that’s not always possible, but it helped me to reduce my stress. (After the move, of course! Packing and moving just suuuucccckkkkkssss, Fibro or no Fibro!). I’m sure you know all the other stuff too, diet, exercise, stretching, gluten free. Try not to beat yourself up too much if don’t manage it – guilt over your lifestyle doesn’t help either. Just do your best!
Wishing you the best.
Thank you for writing to me. Sorry it took so long for me to respond. The old rheumatologist who did anything for me was also one if the worst doctors because he put me on Klonopin which is mainly used for severe bipolar disorder… Talk about being addicted to a med and not feeling like yourself. I tried to find a new rheum and most of the good ones have retired. Plus there is only one other group in the area and no one will take my case in because they all agree that fibromyalgia isn’t something they want to treat. I’m going back to my primary care Dr in a few weeks to go over some of my bloodwork. They ran a bunch of panels for rhumatoid arthritis, lupus, etc. One of my tests came back positive for ANA which stated it was a speckled positive. From what I looked up you can be “normal” and have that say that or you could have MCTD( which fibromyalgia is a part of).
@maddiebee1024 Your very welcome. Don’t worry about how long it takes to respond. I honestly come on here every couple of days and just check. I actually have a prescription of Klonopin. Those who are reading my messages are probably like, what isn’t this guy on!? It isn’t just used for Bipolar. Never google things on the internet! lol I’m kidding. I am on Paxil for anxiety due to PTSD from when I was really sick as a teenager. I have been put on Klonopin maybe 5 years or so back. I take it as needed but I never have been addicted to the medication. I also take it when I’m trying to sleep and my mind is racing or i’m feeling anxiety. Of course the next morning is not so easy to get up. I’m sorry you went through a bad result of it. Where do you live Maddie and I’m sorry if I already asked that. I tried to look quick back in our conversations. Does your PCP believe you have fibro? I don’t think I’ve heard the terms ANA or MCTD. I will have to look them up. Keep your chin up. Maybe I can help look online in your area and see if I can find anyone. If your PCP is willing to work with you to find out whats going on with you then that is great. You need someone with you that is going to fight for you. Trust me we all know what fibro is and there are many many people out in the world who have it who aren’t getting diagnosed. I’m always here to chat. Stay strong Maddie, you will get the right help.
~David
I only know about the he Klonopin thing because my brother has bipolar and was on it for a very long time. ANA stands for antinuclear antibodies. mCTD is mixed connective tissue disease. It was listed on my bloodwork as a possible reason for the positive ANA. I live just outside of Albany NY. I’m trying to work with my PCP but it’s hard cause IDK if she believes me either…
Don’t you just love that? The docs who “don’t believe you”. I’ve actually asked them, “Why would I make this up? Seriously?” For the last 8 years I’ve been telling my docs, “I don’t know what it is, but there is SOMETHING wrong with my body!” Keep pressing for answers, and nap or binge watch tv when you are having bad days – this process of trying to regain your health is soooooo tiring.
@maddiebee1024 @KillerTomato Unfortunately doctors who don’t believe in it think people are just being hypochondriacs. If they can’t scientifically diagnose it then they shrug it off. More and more people are getting diagnosed with Fibromyalgia. Maddie I would just flat out ask her if she believes in Fibro. Most doctors will give their honest opinion. We are also in a time where people are just running to their doctors for pain medication and it’s my opinion some of the doctors who don’t understand fibromyalgia might think patients are after opiod medications. Keep us informed Maddie.