It has been many doctor visits,many tests,ER visits, etc,, Finally closer to some answers... It is Fibromyalgia-after RA,Lupus,lyme, and thyroid ruled out..They are still going to run some blood tests again, but at least I can think that it is not something life threatning but life altering.. I will continue to visit this site for supporting others and some support for myself .. The only one that truly understands is my mom, who has suffered with this for yrs. I was told to go to a pain management doctor. I do not have insurance right now. I lost my job . I am hoping to get some kind of insurance once on unemployment. (So sad that it takes you losing your job to get some insurance,but that is a whole different topic) I will miss my job terribly ,I can't help to think that my time off for doctors visits and my mental stress as of late have caused this job loss(which will end in June)until than no insurance. But I can only think that it is for the best,and I am meant for some other purpose. my goal right now is just to be able to get daily household chores done. I am here for anyone that needs a shoulder, lord knows I could use one too.. Please feel free to write me .. Thanks to all for listening!! (it is therapeutic just to type it and get it off your mind, although typing it without the pain would be nice)
Hi, 1tiredchic. So sorry you have fibromyalgia and also that you lost your job. I want to comment especially on one thing that you said, which is that a bunch of other things were ruled out before you were diagnosed with fibromyalgia. What I want to mention is that I have read many articles that say that people with fibromyalgia very often also have low thyroid and cortisol levels. I was terribly sick in 2009 and thought it was just a long, bad flare of fibromyalgia, but finally this year a dr. tested and told me that i also have low thyroid. I saw a whole lot of drs. and am now seeing a homeopathic dr. from whom I have a prescription for natural thyroid as well as several supplements, including fish oil capsules, vitamin D, adrenal health capsules, and coenzyme Q10 capsules. Sometimes doctors do not do the right thyroid tests for people with fibromyalgia, I also was told that if you are having trouble losing weight and have gained weight without knowing why, sometimes that is because thyroid levels are low. So I encourage you to be very sure that your thyroid levels are not too low. That really creates huge problems. Now that I have been taking thyroid medication for several months and all these supplements, I feel much better. Relaxation exercises and meditation have really helped me too. Good luck. Hope you feel better soon.
It's nice to talk to you... I have had my thyroid levels tested <I think it is the ANA blood test and thyroid panel, came out ok. Also, had thyroid sonogram and no goiters noted. my neck does appear swollen at times and yes I did gain weight. But my docs gave up on the thyroid theory,. I do have along with all my symptoms the flushing of the face. Also have been told that I am premenapusal at 38.. I also did have a bacterial overgrowth in the bowels that i have heard can be linked to fibromyalgia. Although I took the prescribed antibiotic especially for that I still have bowel problems. But then again IBS is a symptom of Fibro.. I'm glad that you are feeling better..I will be going to a pain management doctor ,as soon as I can get insurance.Hopefully they can determine the course of meds that will help. Right now I am starting with 300mg of Neurotin a day, to start with.My doc also ordered CRP and ESR blood work, I should know by Monday.Last check my ESR was high , but could be because of inflamation in the bowels? We shall see. Thanks so much for your reply! Jen
1tiredchic, sorry about your diagnosis. Do ensure they do regular blood tests on you as things like Lupus and RA can take forever to show up in your blood and with your face redness that concerns me. I have a situation where I have positive ANA and RF one time and then negative since. Because of my symptoms my doctor is treating me with plaquenil for likely Lupus. It is unfortunate that with fibro other issues can be involved and it is so muddied we can't figure out what issue in our body is due to what. I do have low thyroid and have been on synthetic thyroid hormone for about 11 years. My ESR is also high. Over the last 6 months with all the drugs and chronic pain I now have I put on an additional 25 pounds on my already too heavy frame. Am working like the devil right now to get it down and it is coming slowly. Finding the support on the weight loss forum here and using the food diary and weight tracker has been so helpful.
I truly understand what you´re going through right now, and I´m so pleased to have found this site, though I´m not always able to summon the energy to respond as much as I´d like to.
I live in Denmark, and was recently diagnosed with FMS/CFS. Looking back, I´ve had FM for the last 10 years, with countless visits to the doctors, who couldn´t find out what was wrong. Bloodtests and scannings didn´t show anything, and finally one specialist ended up saying it was "all in my mind". At this point I couldn´t take it anymore, and decided to try and live with it, stop asking the doctors, and just get on with living my life as well as I could. At this point I was constantly dead tired, had pains in my muscles and joints, and had difficulty walking longer distances because of pain in my left leg. But I was able to go to work, and take care of my family and friends as usual. Then in Nov.2008 I had the flu, and from then on, things really began to go wrong. To make a long story short, I once again went through tests for MS, Myasthenia Gravis, Borrelia and other muscle disorders. Neurological tests showed abnormalities, but still no explanation. Finally I met a specialist who listened to my story, tested me, and quickly stated that there was no doubt about I was suffering from CFS/Fibromyalgia. Shock, but also such a relief to finally have a name to my illness. The CFS started at the time of my getting the flu, and these symptoms have been incredibly disabling for me. I too, lost my job, as I was constantly dead tired and in so much pain. I used to be an independant and energetic person, today, I need help from my husband and grown children to do just the simplest things. Have difficulty using my arms and hands, and need help to open things, lift things, and even to wash my hair. I can´t walk very far because of pain and weakness in my legs, and have to use a wheelchair if I need to get away from home, shopping with my family, or just to get out of the house. I´m still clinging to being able to drive my car, but this is really an illness that can get one feeling lonely and completely left out. My husband and children are fantastic in their support, but I can still (unfairly) become desperately angry at especially my husband for not always being able to understand.
My present doctor is a good listener, and knows a lot about CFS and FMS, a great help, and I´m now on the waiting list for a meeting with a psycologist, to help me cope with this feeling of loss,(job, former identity, former independant woman) which I hope will do good.
As you say, a pain management doctor would be great for you, hope you hang on til the insurance works. I´m on the waiting list for a pain management course, which I´m looking forward to, as I´m dependant on so much pain meds to be able to get through my day.( Used to be terrified about taking medicine!) Still am, but theres no alternative for me right now.
I feel with your feeling of loss, and that you miss your job, but as you say, I´m sure you`ll discover other valuable sides of life, and that soon you´ll see there´s much more to life that we just didn´t see before :) If I manage to do a bit of cleaning in the house one day, I try to remember to feel good about having done that, I miss my job too, but now I try to find other values. Started painting pictures again! Didnt have time for that whilst working. Sometimes when I´m really down, I look out at the trees in the garden, feed the birds, and spend good moments watching them. I´m still me, you´re still you, yes, life decided to challenge us and our surrowndings. Hope you find the strength to see the good things, life is still a blessing, hang in there :)
Thanks for letting me tell my story, would love to hear how you´re doing.
Thank you for your comments and concern; Yes I feel there may be more going on with me, but am happy to have some kind of answers... I haven't been to a neurologist. I'm giving meds a chance (Neurontin 300mg day) it probally no doubht will have to be monitored..The only thing is I'm also on Topril for high heart rate and high blood pressure. I hope they mix ok?? I'm waiting for another ESR and CRP blood test to come in to see how those look,previously my ESR was high, I believe my symptoms really creeped up on me when I suffered from toxic hepatitus in OCT. From too much acetementhan from severe toothaches. My liver function went back down but that is when evreything really went down hill so much.I had aches and pains previous but nothing like this.I have continued weakness in my arms and legs and hands. They are weak even to look at clothing on racks that are higher up.. Climbing the stairs is getting worse.. It really bites... I am going to try to stay as positive as I can, it is depressing. I haven't heard much in the way from my family for support. But that's not suprising. It will be a struggle, but I will hopefully not give up once I have insurance to make sure that there isn't something else going on...Take care of yourselves and continue to write for any support ..We will get it from eiother! Jen
Hi! I can totally relate to your relief of a diagnosis. I waited a few years to get a fibro diagnosis and was releaved to have a medical condition not a bunch of docs telling me it was in my head.
I think what this thread is showing, is that like the others, after my fibro diagnosis I began waiting for the "real" diagnosis. Fibro and all the other diseases with "vague symptoms" are very hard to tease out. I too, am now looking at thyroid issues and other possibilities like SLE.
My hope is this will not be the case for you. Certainly, many people have straight Fibro diagnosis with all its lovely accompanying issues like, IBS (ugh I have that lovely one). ;)
I wish you the best and my advice is doctor shop. That is, find physicians who listen to your questions, make you feel comfortable and never let a doctor tell you that you and your body are wrong. Before I lost my insurance I went to every specialist you can think of. I am now on county medical insurance and I doctor shopped with that insurance as well. Certainly, it was not as easy but I found a GP who listens, treats me with respect and takes to my concerns seriously without judgment. She also is good at distinguishing my anxiety to actual symptoms which is even hard for me.
So, do your homework :), be well and all my best,
Thanks so much for replying; Yes soon as I get back on insurance, I plan to change PCP .. I'm not very happy with them..They never follow up ,they just refer to other docs. Never even check with you to see how you made out at specialists.. :( That's the most frustrating about all this for so many of us. The docs do not communicate with eiother.If they would just talk to eiother many of these diseases would come to diagnosis much quicker. And if they would just stop making you feel as though you do not want to discuse your long list of symptoms only to make you feel like a hypochondriac. So you leave out critical info. If I could offer up advice to anyone out there..Please tell the docs evrey symptom, because as you see it is all part of the puzzle.. Yes I am diagnosed with Fibromyalgia, but I do feel there is something else going on as well, and that fibro is the biproduct of the actual cause. I will continue my fight for answers as I hope evreyone will. May is awareness month , hopefully we can spread the word. Too many people suffer from this and there needs to be more research. I wish you the best
I laugh thinking back at what docs must have thought of me. I have saved every test, record ect I have had (except the stupid rummy I had a falling out with). I research my latest ailments for upcoming appts and come in with a typed up list and or detailed notes to expedite the process. I have MADE some docs call other docs. I have become a force to be reckoned with, when needed. ;) I also worked in social services for many years and understand the system all too well. So, yes, I agree with everything you said. We arr our own best advocates.
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