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Fibromalgia ? Help

Oct 19, 2015 3:40 AM

Hi im new here ive been in pain now for a year with no diagnosis all tests clear and recently someone mentioned fibro ive looked it up and it fits all my symptoms but after reading about some doctors not believing in it im scared to ask my doc i need help what do i do ? I live in uk any advice would be greatful thankyou

Oct 19, 2015 7:24 AM

Jo I don't know if this will help but I have found some doctors frown upon self diagnosis. What I did was write down all of my symptoms to take to the doctor. What I didn't know if thyroid issues can cause similar so for me that is where it started. I kept that list and kept adding to it along the way. The unfortunate part is really until diagnosed it could be a lot of things. I have fibromyalgia but after being put on meds I was still in terrible pain. It would turn out I have spinal issues. Also the Web can be a curse when it comes to figuring out what is wrong on one hand when looking up my symptoms it said arthritis which has turned out to be true. On the other hand when I added some additional symptoms it said multiple sclerosis which I do not have. The most important thing is to get to doctor and get things started. Most likely they will start with blood tests and start ruling out other issues. Also if you can see a rheumatologist that might make things quicker. Unfortunately it may be a long journey but you need to find out what is wrong. Good luck and I hope they find you diagnosis quickly.

Oct 19, 2015 7:50 AM

Jo, I am sorry that you have been in such pain for a year and still have no diagnosis. Everything I have learned from pain management is that pain is a very tricky thing to diagnose. There are so many variables and so many things that mimic others. I agree with Shammegren, the Internet can be both a help and a hinderance

Oct 19, 2015 7:53 AM

Oops... Hit send too fast!!!
At any rate, there are truly doctors that frown upon self diagnosis but that does not mean that you should not be well read and be your own advocate. I would go to a rheumatologist and/or a neurologist and they will run specific test to your symptoms. It's a great idea to keep a list of your symptoms and where you're hurting along with what makes it better or worse. I hope that you get the answers you need. In the meanwhile, gentle stretching, heat, warm baths, rubs, massage, etc. anything that helps and can get you through. I wish you the best of luck and welcome to the community.🌻🙏🏻

Oct 19, 2015 2:51 PM

I went through horrible long drawn out testing before they finally diognosed me with fibro.

Oct 19, 2015 3:23 PM

Hi Jo,
My symptoms sound very much like fibro as well but fibro is really the process of exclusion. My gp diagnosed me with this years ago but other doctors don't think I have that and recently I went to a rheumatologist and he thinks I am either vitamin d deficient which is causing my pains or I have a sleeping issue or its to do with my spine. So I have to do a blood test, sleeping test and a spine MRI. I know doctors don't like self diagnosis but I don't care this is your health and we need to take care of yourself. I have trusted so many doctors in the past and if I hadn't just ignored all my issues j probably wouldn't be in this horrible state now. I suggest you do whatever it takes and do as much research as possible yourself. I am going to do those tests but I am also going to try other things as well ... I strongly believe a lot of the cause of fibro can be related to the gut and a virus. I am also seeing a Natropath. Do as many tests as you can to rule out any other causes. Anyways I hope I have helped and I am really sorry to hear you have these pains :( keep us posted on how you go.

Oct 19, 2015 3:49 PM

Hi Jo,
I'm new too have just joined tonight.
I have fibro I was diagnosed last year after suffering for about 2 years. I saw a rheumatologist and he gave me the diagnosis altho my Dr isn't the most sympathetic of people and I'm not sure he believes me. I won't give in tho and will fight them all the way to have recognition. Where in the UK are you? I'm up in Northumberland x

Oct 19, 2015 3:55 PM


Oct 19, 2015 4:12 PM

Peaceful warrior I know in my post I was not saying don't inform, educate and research yourself. I know from experience all to well how patients are treated when they self diagnose without any tests and so on after being my father's advocate for 10 plus years, then my husbands and now mine. We have walked out, fired and denied procedures and tests where a blood test could have answered it but they wanted to go scoping. Once you start going through to many doctors they have a label they will diagnose you with....it's called hypochondriac and trying to get away from that is near impossible. My dad was diagnosed for over 10 years as having the flu and a druggie looking for pain pills oh and a hypochondriac finally diagnosed with needing 2 back surgeries and hep C. Then only lived 10 years after diagnosis. I was diagnosed with fibromyalgia along with no vital D and hashimotos thyroid in i think 2006 but not one doctor would do anything they said oh its nothing exercise and lose weight so i went to a different doctor and a different and i too was labeled hypocondriac. I moved to a different state which is how for the last year plus i am finally getting help. Rather than self diagnosis asking for certain tests, procedures, specialist referrals and so forth especially if you like your doctor can work just as well. Work with your doctor not as your doctor can be just as effective. Now I can just email my doctor and say i want a referral to this doctor for this and my response is...faxed no questions asked. I apologize if this comes across witchy it is a my day thing and nothing more I just wanted to elaborate on why I said what I did and where I was coming from

Oct 19, 2015 5:30 PM

Thankyou for all your advice i have had blood/urine tests back xrays etc and still no clue i am scared my doc will think im a hypercondriac as i suffer with depression as well when i go to docs i tell him about the worse pain and hope whatever he gives me will sort out the rest. i told him a while ago that id had peircing headaches for 3 weeks straight he told me it was stress and i shud ask my partner to give me a massage i even tryed to convince myself i was causing my own pain when i heard about fibro and looked it up it gave me hope that i might finally have an answer ive started a pain log and im going to show it to doc when i go back in a week and go from there thankyou again ps im in south yorkshire x

Oct 20, 2015 4:17 AM

My primary physician is a internal specialist. I have learned that if you don't like what the doctor is saying tell them so or leave their office. I once had a doctor in 1992 tell me that I had fibro because I didn't eat enough oatmeal. Not kidding he was writing a paper on the benifits of oatmeal. More power to you doc, but I need real help. I saw five more Dr's before one knew something about fibro. That was back in the day when they called ebstein bar. Anyways, ask them question like an interview, have the worked with fibro patients, what are their treatment recommendations. Wil you be able to participate in the decisions of your treatment. Basically if you don't like there answers you can leave. Love and light moshell

Oct 21, 2015 9:37 AM

Welcome Jo35 & Lula1!

Jo, My PCP mentioned it to me in 2007-2008, but he didn't dx until 2012. My rheumy doc dx sjogrens this year, as well as my endocrinologist dx hypothyroidism this year. I was surprised to find all these issues share multiple symptoms. I think the idea of keeping a list of symptoms (eggs, when started, if meds helped & what tried, etc) is a good idea. Good luck & you'll be in my prayers! 🙏🌼

Oct 21, 2015 8:04 PM

Well been to docs today and he was useles didnt listen to a word i said when i asked if it could be fibro he actually said well youve had blood tests and alls normal .a doctor should know fibro doesnt show up on tests and cant be diagnosed that way. he just said depresion and pain go together and i should try counseling AGAIN 😠 not sure what to do hes increised my amitripteline from 20 to 40mg a night to help me sleep its 2am im still awake arrgh

Oct 21, 2015 8:34 PM

Will your doctor send you to a rheumatologist? Have you had your thyroid tested it can have the same symptoms I know that probably made my fibro harder to diagnose. Do you have your test results? I listened to my doctor and a couple years later I went to another doctor who looked at my results and said your thyroid has been off years and shows. Finally if you feel your doctor is not a good match....Fire him. Bottom line if you can't openly communicate with a doctor you don't need them. On the flip side while it could be fibro there are a million other things it could be, be open to the fact it may not be fibro it may be something else or as so many of us it may be a combination of numerous things. Good luck

Oct 22, 2015 4:50 PM

Im not sure if he will refer me or not im going to do the month on this dose and see how it goes and if no improvement ill ask for referal if not ill look into changing doctors x

Oct 22, 2015 9:02 PM

Yeah it sounds as if your doc may not be the right doc for you. Too many doctors diminish our opinions and chalk everything up to depression. I think this is especially true for women. Not saying docs don't do this to men as well.

Oct 23, 2015 9:12 AM

Hi, is the doc a primary care doc? My PCP wasn't giving me answers. I have a psychiatrist who gives me my anxiety/depression meds, endocrinologist who does my thyroid meds, and my rheumy doc does my OA, fibro, & Sjogrens meds. My PCP said I don't have a thyroid issue (ct & us showed damaged) and he insulted my endocrinologist by saying I didn't need any meds... She went to school longer than he did, specializing in the endocrine system. My labs have been off for 7-8 years and my PCP was saying I "had all the symptoms of thyroid issues". My psychiatrist gave me the referral to see a thyroid doc because he agreed something was wrong. Shammagren is right on the symptoms of thyroid and fibro being very much the same. Sjogrens also has the same symptoms. You really should see a rheumatologist because they will run a lot more tests than a PCP will. Since my sjogrens dx and treatment my daily general pain has been cut in half. Good luck finding the right doctor! 🙏🌼

Oct 23, 2015 11:16 AM

Thank you yes my doc is a gp i dont have any others at moment im going to ask for a referal to a rheamatologist when i go back

Oct 23, 2015 1:33 PM

I'll be praying for you. Have a blessed weekend. 🙏🌼

Oct 23, 2015 5:27 PM

Hi Shammagren,

I totally understand where you are coming from and self diagnosis can really be dangerous and also nerve wrecking. If you have a doctor that can you can trust and that can help them that's the best alternative. In my situation I don't have that with my rhymotogist he just said you need to do a couple of test and hope something shows up if he doesn't then it's fibro and you wouldn't want to have that. He wants me to do a sleep test which I just found out costs $1,650 and didn't even bother giving me a referral to the public hospital. This is why I am forced to try and figure it out myself by researching and finding alternative ways to treat my conditions. Day by day I am getting worse. I have found a Natropath which I am hoping can help and I have found a good GP. I think in my case I have no choice to self diagnose when no one else will diagnose me lol

Oct 23, 2015 5:32 PM

Realistically I think you need to be open and not be so quick to put yourself in a category before you have done lots of test to support your claim. I am hoping to solve the puzzle by seeking help from a number of professionals since not only one can help me.

Oct 23, 2015 7:35 PM

Peaceful warrior if your naturopath was anything like the one I went to you are on a good path. Mine discovered all sorts of things including that my thyroid was still off. They treat on how you feel not your test results completely. Make sure you get what all test results are don't let any doctor tell you they are "fine" then you can look them up find out what they are for and where they should be. In addition when you look up some tests it will say typically X Y and Z tests are done also with that then you have a direction. I wish I could send my doctor to you her specialty is internal medicine and PCP with areas of interest in Diabetes, Heart Diseases, Women's Health, Mood Disorders, Geriatrics which sums up most of my needs. She is awesome it took us a few months to establish a good rapport and trust but now it is the best doctor patient relationship I have ever had. I really can't say enough good about her.

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