I'm Meg and I found this site through searching for good Fibro blogs to read in my newsfeed. I've been officially diagnosed about 2 years but can recognize the symptoms were there at least a couple before that. I'd actually gotten to the point where I didn't count the pain as a symptom because I'd come to expect it. My biggest tell was that I was having migraines, many more than I ever used to, and I couldn't tell what was triggering them. My doc even did an MRI, nothing. I work in health insurance and have worked on the clinical side and a nurse co-worker suggested I look at Fibro to explain everything she heard me complain about. (in a nice way, LOL). It fit, 100%. I got my doc to refer me to a rheumatologist who completely agreed once I described everything, pain point tested, all that.
I've tried various things since that. Prozac, useless. Nortryptiline, useless in that I wasn't coherent enough for work. (and we all know, in the USA for now, no work would mean no insurance and no treatment.) Various vitamins seemed to help at first then lose any benefit they gave. I'm on nothing now and just tired. I also think my memory foam mattress that was so wonderful in the beginning is degrading, because the dip takes longer to come back and my hips are killing me when I sleep more than 5 or 6 hours on it. I get so frustrated at spending money for things to supposedly help, and then they don't. Anyone else have that issue?
Anyhow, I live in a northern suburb of Seattle, 2 cats, my sweetie, and my mother (I'm her caretaker, which is hard). Feel free to ask questions, and nice to meet you all!
Welcome Meg, I am really glad you found this site. There are a lot of great people here all willing to tell their story and tell about things that have helped them. A great thing to do is just go back and read discussion, there are so many great one. Hope to chat sometimes. Gentle hugs, Robin
Welcome Meg, from one newbie to another!
I look forward to getting to know you!
welcome meg. also new to the group. I have terrible pain with my hips after sleeping, and it seems to last for days. well one thing you could sleep on your back. but, I always wind up turning. I also found that a topical analgesic gel ( muscle rub) the only thing is it is only a temporary relief. but, give that a try. sometimes I have it on so many body parts a once you would think its lotion .lol good luck you find anything that helps keep me in mind.
Hi Meg - welcome!! My name is Laurie. I just joined this website about a week ago, and it's the best thing I have ever
done in terms of dealing with my FIbromyalgia. I have so many trigger points, it's ridiculous. I, too, have migraines and they started around the same time I was diagnosed with FIbro - 30 years ago. My migraines are from the FIbro in my neck and it flares up constantly. RIght now, my nurse is in the process of getting a new Rheumotologist for me. Apparently this doctorspecializes in Fibromyalgia. I am very excited about getting an appointment with her. I noticed your first name is Meg? That's the name of my closest friend! LOL I have suffered from depression almost my whole life, but it got worse after I was diagnosed with FIbro. Ob course 30 years ago, not too much was known about it so I suffered for many years before a doctor finally got me going down the right path as far as my meds. I am so sorry that you had to go through all those meds to find something for you. Yet, you haven't found anything that works. Believe me, I have been there, My father, who was a doctor in California, was dying of Colon Cancer, and one evening when I went to see him at the hospital he warned me that the practice of Medicine was going downhill and that I was going to have to learn to be my own advocate to get things done. I never forgot this and it's true!! For years I was given the run-around involving my FIbro. In the meantime my Fibro was getting worse and worse. I had never in my life felt such pain - both physically and mentally in trying to get people to understand what I was going through. It was really wearing me down. However, now, thankfully, Fibro is finally getting the recognition it deserves and the medical field is starting to really listen to their patients who are afflicted with it. I am starting to feel more confident about new things that are coming out for us. I am currently on Prozac. I started out many years ago on 20 milligrams and now take 60 milligrams a day. For me, it works great. I have suffered depression since I was a little girl. Every two months I see my med therapist, who I just love! He goes over my meds with me and asks me if there have been any changes and so on. Despite the good treatment I get for my FIbro, I still have horrendous days filled with physical pain. RIght now, I have horrible pain in my right shoulder blade that radiates down to the lower part of my back. Like most of us - I am a very poor sleeper, most of it is due to the pain in my hips. If I have nights where I toss and turn because of pain, eventually, I just get up and start the day. But by early afternoon I am just wiped out. I try to do my errands and everything else in the morning. Meg - finding meds that work for FIbro is like a 'trial and error' period that we all go through. It takes a while to get the combination of meds that work for us, to work. We must all take care of ourselves going through FIbro, and that includes reducing the stress in our lives. I have to be honest, I am not too good at getting the stress down - but I try! (Smile). After my FIbro was truly diagnosed, then other medical problems cropped up, that to me, seems to be pretty typical with people like us. I have to say, that this particular Website is absolutely the best one I have seen and I am so happy to be a part of these wonderful people that give me advice, support, and a listening ear to all I have to say. I hope so much that you will find relief and the right meds that work for you. It takes an awful lot of patience, but it will really be worth it in the end. I am so happy to have met you and there isn't anything you can't talk about on this website. If you feel like you have to vent - go right ahead!! Looking forward to being in touch with you! Laurie
Welcome to the family I’m pretty new too but you’ll feel the love real quick like I did.
Hi Meg, WELCOME !!!
I wanted to add that, yes I have also spent a small fortune on things that claimed to help fibro and now they just sit in my cabinet, it’s very frustrating, but we have to just keep looking for what may help. Seems like what may help one may not help another.
It took me a long time to find the right combo of things that help, and that combo seems to change frequently.
This is a great group, I’m so glad you have joined us
Hugs & blessings
I'm new, too, and I can tell you this place is one of the best I've ever found! I'm sure you'll get lots of support and information here ^_^
have a nice time here
Laurie, what is a med therapist?
Welcome, Meg! My name is Terry, and I am new here too. We have so much in common. I live in the Puget Sound area due west of Seattle on the Kitsap Peninsula. :-) I have two cats also, a husband, and my mother lives with us as well. She's ambulatory and doesn't need physical care, but probably will eventually. I'm sure it will be a challenge physically.
I was diagnosed with fibromyalgia back in the 1990's by a Rheumatologist. Back then, they called it fibrositis. I've actually had it since the early 1980's. It does seem to get worse as time goes on. Having frequent migraines is how I got on medication for it. I think that the migraines have a lot to do with lack of sleep, at least it did in my case. After many migraines, I went to the doctor's office and demanded they do something. They put me on Neurontin, which originally was like a miracle drug for me. I felt better right away. Eventually, I got used to it and had to switch to Lyrica. I got used to that one too and have switched back to Neurontin. It's not being as helpful as it was before, and I am barely sleeping.
The conundrum of fibromyalgia is that sleep helps with the pain, but the pain keeps you from sleeping. Even 2 extra strength Vicodin at bedtime isn't enough sometimes, like tonight. So here I am, at the end of yet another sleepless night. Oh well, at least I can take a nap today I suppose.
It's nice to meet you, and I'm glad you're here.
Welcome Meg! I just joined the support two Saturdays ago. It has been very helpful and informative! The people are great and think you'll find that it feels like coming home.
Welcome. I’ve had chronic fibro for about six years now. I wish I knew of something that was 100% helpful but sadly I don’t. All I can advise anyone to do is to keep stress down as much as possible, rest when you need to and don’t try to over do it when your having a good day.
Gentle hugs to all <3
HI I KNOW HOW YOU FEEL NO POSITION IS COMFORTABLE.
Hi Meg, I am also a newbie here and so far have read some great discussions. Very helpful! I am also newly diagnosed with fibro! Welcome and I am sure we will get to know each other better!
Well, articles I’ve read and my pain management dr agree that narcotics do not work for fibro. They are not for the nervous system. He has given me Nyucenta with good results. It is a new drug esp for nerve receptors.
I am also on cymbalta, neuronton, remadol? A muscle relaxer, I get Botox injections every 3 months for the migraines and use Zomig in between as needed, and I get trigger point injections every month for the knotted muscles.
Seattlemeg, I am on my 2nd memory foam topper. You need at least 3 inches. I would advise more. Take care.
Yeah, this thing is 11 inches thick and was several hundred dollars, and is only a couple of years old. I'm extremely disappointed.
I was talking about the topper. I have a 10" memory foam mattress with a 3" topper. It is a lot less expensive to change out the topper every couple years.
You may want to invest in one. I find deals on Bradsdeals.com and Woot.com
Sorry you are having problems.
Hi Meg, Nice to meet you. I'm Susan W and I live in SE Michigan. I don't know how long I've had fibro lol. For me, it's a result of Ehlers Danlos Syndrome with hypermobility which I've had my whole life but didn't know it. EDS is a genetic connective tissue disorder that causes the body to make bad collagen. Who would've thought that my cool double jointed tricks were actually a symptom of a genetic disorder? Did your doctor do an upright MRI? I know a couple people with Chiari malformation who didn't have the source of their headaches revealed until an upright MRI was done. As for the mattress, I have a Simmons Beauty rest pillow top and am happy with it. I looked at the memory foam but a furniture store salesman whispered to me that they can freeze here in Michigan and they're useless if they do, so I got this one instead. We have one kitty but two funny chihuahua mix dogs. That's my chiweenie ChiChi in my profile pic. He loves clothes because he gets cold easily. I'm glad you found us. This is a good place for sure.
hugs and have a good Sunday!
Susan W in Metro Detroit
WELCOME SEATTLEMEG. THIS IS A GREAT GROUP OF PEOPLE LOTS IF ADVICE INFORMATION
YOURE GOING TO HAVE TO TRY LOTS IF THINGS RIFHT NOW THE COMBINATUON OF PREDNISONE AMITRIPTYLI TRAMADOL BENADRYLL IT HASNT HWLPED IM WAITING TO SEE THE RBEUMU BUT RHERES A PROBLEN A MISCCMOMMUNICATUON DUDNT KNOE RMOBE SISTER WAS HAVIBG A MEDUCAL ISSUES AND THE ORHER SISTER DOESNT GAVE ROON FIR A GYEST FIR RHE WEEK IF I NWED TO AND SHES WORKING AND TSKIBG CKASSES I SHOULD HAVE ASKED IF I WIN RHE LOTTERY ILK TSKE A LIMO TO RHE DRS. WITHOUT TGE SISTERS ILK HAVE A FRIEND CONE WITH ME ASK TI HSVE RHE BONESCSN DOBE WIRJ NE IB IF NOT ILE IT.DONE HERE MY FRIEND HAD. IT DONE HERE JUST FAX. THE ORDERS HAVE THE TEST DONE FAX RHE RESULTS FAXED TO THE DR HE DECIDES RGE TREATMENT CALLS ME AND TELLS. ME CALLS THE PHSRMACY. WITH THE ORDER ILL JUST IF I HAVE TO STAY HOME NOT GO TO THE DRS AND TRY CSOSAISUN WHICH IVE READ IS SUPPOSED TO IBTERFERE WITH THE PRODUCTION OF SUBSTANCE O WHICH IS SUPPOSED TO CAUSE BE RHE SOURCE OF PAIN ITS SUPPOSED TO BURN OR STING THE 1ST WEEK YOU WONT FEEL THE FULL AFFECT FOR 6-7 WEEKS ITLL PROBABLY TAKE THAT LONG IN SECIBD RHOUGHT IT TOOK 1 1/2 WEEKS MAYBE 2 WEEKS RHST WILL BE ENOUGH TO SEE IF ITLL HELP MSYBE MAYBE NOT WELL SEE ILL KEEP YOU POSTED