tag:blogger.com,1999:blog-7505202305821415305.post4030513870583422208..comments2023-12-17T23:47:52.627-08:00Comments on Chronicles of F.I.B.R.O.: No More Rheumatology?Leah Tylerhttp://www.blogger.com/profile/09339986620263501997noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-7505202305821415305.post-44275728136232993032017-02-05T05:07:32.022-08:002017-02-05T05:07:32.022-08:00What an awesome post, I just read it from start to...What an awesome post, I just read it from start to end. Learned something new after a long time. Its extremely good and very helpful for me.Thanks for sharing this great post.<br /><a href="http://rheumdoctor.com/" rel="nofollow">rheumatoid arthritis</a>Anonymoushttps://www.blogger.com/profile/05933253257525088918noreply@blogger.comtag:blogger.com,1999:blog-7505202305821415305.post-87719339656053718312012-11-09T00:32:08.672-08:002012-11-09T00:32:08.672-08:00I live in southern CA and my internist referred me...I live in southern CA and my internist referred me to a fm specialist a couple months ago. I haven't gone yet but I'm hoping to get some answers to some questions which my rheummy (I also have RA) didn't know. My biggest frustration right now is finding a counselor who is knowledgeable about chronic pain and the feelings of loss of my life dreams and being disabled.<br /><br />Thank you, Leah, for all you do. You are the voice of so many:-)<br />Carol ScheerAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7505202305821415305.post-21526289706748740702012-10-26T09:11:15.172-07:002012-10-26T09:11:15.172-07:00Finally, an issue that I am passionate about. I ha...Finally, an issue that I am passionate about. I have looked for information of this caliber for the last several hours. Your site is greatly appreciated.<br /><br /><a href="http://naturalpaincream.com/athletes.php" rel="nofollow">injury recovery</a>Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7505202305821415305.post-80602128883279800852012-10-21T21:39:16.689-07:002012-10-21T21:39:16.689-07:00My rheumy told me (since I don't like taking m...My rheumy told me (since I don't like taking medications) that I don't have to take anything at all, its just a matter of how much pain I can tolerate. I asked her about whether I should see a neurologist, and she said the neurologist would probably just send me back to rheumatology. Sigh. We are really our own best physicians and advocates.DDhttps://www.blogger.com/profile/01061399352477972492noreply@blogger.comtag:blogger.com,1999:blog-7505202305821415305.post-77031753971455273742012-10-19T16:36:11.893-07:002012-10-19T16:36:11.893-07:00I saw my Rheumy yesterday. She didn't mention ...I saw my Rheumy yesterday. She didn't mention anything about no longer seeing Fibro patients, so I asked. She gave me the same kind of look that I imagine Leah got. She took a long, deep breath and said the way they were handling it in their practice is that if you are already a patient then they will continue seeing you. But they were not seeing any NEW patients. But she said "The sad part is that neurologists havent picked up Fibro patients yet"<br /><br />Thanks for the blog Leah :)Amandanoreply@blogger.comtag:blogger.com,1999:blog-7505202305821415305.post-26003892630811285542012-10-16T06:07:38.083-07:002012-10-16T06:07:38.083-07:00Hi,
Will you please post a link to your Blog at T...Hi, <br />Will you please post a link to your Blog at The Fibromyalgia Community? Our members will appreciate it. <br />Members include: Those living Fibro, Family and Friends, Experts, Support Groups.<br />It's easy to do, just cut and paste the link and it automatically links back to your website. You can also add Articles, News, Photos and Videos if you like.<br />Email me if you need any help or would like me to do it for you. <br />Please feel free to share as often and as much as you like.<br />The Fibromyalgia Community: http://www.vorts.com/fibromyalgia/<br />I hope you consider sharing with us.<br />Thank you,<br />James Kaufman, Editor<br />Jameshttps://www.blogger.com/profile/00310992520907897841noreply@blogger.comtag:blogger.com,1999:blog-7505202305821415305.post-72234959541830827522012-10-15T22:17:12.898-07:002012-10-15T22:17:12.898-07:00I was diagnosed in 2004 by my rheumatologist and I...I was diagnosed in 2004 by my rheumatologist and I experienced my share of being a guinea pig for all the latest medications. He only saw me every 6-9 months & I depended on my primary care provider for treatment. After becoming unable to perform my job in 2009 and ultimately losing it along with my healthcare, I could not afford the cost of a visit to my rheumatologist. I filed for disability and I finally saved the money needed to visit him only to be told he was no longer accepting fibro patients! but he could refer me to another group. So I contact this group of doctors, make an appt and then I am contacted a week later to be told they would not accept me as a patient since I did not have health insurance. I explained that I would be paying CASH, upfront and was still denied!!!! If not for my primary care physician & my psychiatrist I do not know what I would do-they are the only ones who seem to care!! It is a sad situation to be so alone with this horrible illness. I hope and wish for this nightmare to go away.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7505202305821415305.post-47968266230243618832012-10-14T16:39:51.290-07:002012-10-14T16:39:51.290-07:00What a depressing situation.
I was diagnosed with...What a depressing situation.<br /><br />I was diagnosed with chronic myofascial pain syndrome in my 20's by a rheumatologist who said that the good news is that I wouldn't get any worse (he was wrong), and the bad news is that I wouldn't get any better, and, oh yeah- there is nothing he could do for me. That was the end of that experience.<br /><br />Now I see a doc who owns a pain/rehab clinic and he isn't much better. He is typically callous, takes calls during my appts, pushes drugs irresponsibly ("so what if you blow your kidneys or liver? just get a transplant!"- I'm not kidding), has no concept of quality of life, and seems to have less than a cursory knowledge of fibromyalgia (his colleague was the one who changed the diagnosis to fibromyalgia just before I turned 40).<br /><br />I don't know, any neurologist I have seen (9 so far), has no idea about fibromyalgia. Not sure that is a step forward.<br /><br />Sounds like we are being orphaned, and it makes me have a little panic to think about it....FibroFacialGalhttps://www.blogger.com/profile/00490696867905410299noreply@blogger.comtag:blogger.com,1999:blog-7505202305821415305.post-35146840839502142782012-10-14T05:34:58.834-07:002012-10-14T05:34:58.834-07:00I as diagnosed by a Rheumatologist but I felt like...I as diagnosed by a Rheumatologist but I felt like she felt then it was a 'non-diagnosis' and immediately discharged me back to my GP as there was 'nothing she could do for me'.Lelshttps://www.blogger.com/profile/10454921462336667706noreply@blogger.comtag:blogger.com,1999:blog-7505202305821415305.post-31495524057566590682012-10-14T01:18:00.701-07:002012-10-14T01:18:00.701-07:00I have not seen a rhuematologist since my diagnosi...I have not seen a rhuematologist since my diagnosis a long time ago... thats how sucky my treatment has been. I do have chronic migraines as well and my neuro did prescribe me Lyrica as a preventative/FM treatment and that is the extent of my FM treatment to date. But I have wondered about this due to the fact FM is neurological. So when I got bounced to a new neurologist and thought hey maybe this dude might know a little about FM and could answer some questions I had regarding whether the vertigo I have is FM related or migraine associated vertigo... well lets just say if we expect treatment from neuros we should all run screaming into the streets because I knew more than he did about FM. So much for my idea of seeing on specialist. I suppose I ought to insist now on seeing a rhuematologist again. Nevertheless I think neuros should pick it up... it is in their arena, they are just intimidated by the lack of ability to treat it. But honestly... they haven't had any luck with my migraines either... maybe because they have never looked at the whole picture before. I know in Canada it is firmly in the hands of rhuematologists for sure.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7505202305821415305.post-15310423922519971592012-10-13T22:18:20.306-07:002012-10-13T22:18:20.306-07:00Many GP's do treat Fibro even the Nurse Practi...Many GP's do treat Fibro even the Nurse Practioner at my doctors office treats Fibro, CFS and relative illinesses. But I quit seeing my Rhum when he patted me on the leg and said Oh you are going to be just fine and all the while I felt like I was dying with pain, the strongest meds my Rhum gave me was Ultram which is not great for major pain. So I opted for my General Practioner until he left the office for another job. He was great and was up to date on the information on Fibro not all doctors are. even the Nurse Pract were good. But the best for Fibro when it gets out of control is a Pain Managemant Doctor, someone who believes in Fibro and who will treat Fibro. Find your self a Pain Management Doctor. They are usually in all major cities and cost no more than Rhum and insurance will cover for PM but if you can find a good GP to treat you that is great also.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7505202305821415305.post-39589667797413519572012-10-13T14:14:26.099-07:002012-10-13T14:14:26.099-07:00I just recently went to my rhuematologist and he h...I just recently went to my rhuematologist and he has said nothing about his field droping us. Without him I wouldn't be able to get up in the morning. I do have insurance and I see him every three months. If it makes you feel any better, I am still in pain, can't work, clean my house 2/2 in one day much less 3 days! I try to eat healthy foods and exercise, but what is one to do when walking 1/2 a block is exhausting? I was so happy to find this blog. I also have carpel tunnel with failed surgery and can't type for long periods so I use dragon speak. The drugs I have to take to just live make me tired, forgetful and basically useless. I wish there was a cure. I tried working for 4 years after my diagnosis but it became impossible since I have so little energy. stress pushed me over the edge. It's good to share with others who know what I am talking about.<br />Annettehttps://www.blogger.com/profile/12734127077713120868noreply@blogger.comtag:blogger.com,1999:blog-7505202305821415305.post-49816608066988503652012-10-12T16:06:26.339-07:002012-10-12T16:06:26.339-07:00Wow, this is not a good step. I do hope that neur...Wow, this is not a good step. I do hope that neurology will pick us up.<br /><br />HeatherHeatherhttps://www.blogger.com/profile/18184342717608985185noreply@blogger.comtag:blogger.com,1999:blog-7505202305821415305.post-46949168638949970752012-10-12T16:00:43.794-07:002012-10-12T16:00:43.794-07:00I'll have to call my rheumatologist and see if...I'll have to call my rheumatologist and see if they are still working with FM patients. I only see them 1x a year to update my meds and talk through what has changed since i'm not insured. I just can't afford a huge bill.<br /><br />Thanks for the update.<br />Anonymoushttps://www.blogger.com/profile/11389095466274228251noreply@blogger.comtag:blogger.com,1999:blog-7505202305821415305.post-17679653922738421072012-10-12T13:28:57.345-07:002012-10-12T13:28:57.345-07:00Do you know if this is just limited to the mayo cl...Do you know if this is just limited to the mayo clinic in Arizona or all mayo clinics?Validationhttps://www.blogger.com/profile/06190432004716232725noreply@blogger.comtag:blogger.com,1999:blog-7505202305821415305.post-83155803966353482652012-10-12T13:05:28.195-07:002012-10-12T13:05:28.195-07:00This is very frustrating news. I already feel like...This is very frustrating news. I already feel like my rheumatologist is becoming less and less helpful but hearing about the Mayo Clinic has me even more uneasy. I work a full-time job and when I'm off I don't have the energy to look for another doctor who would be a little more understanding... I've contemplated looking elsewhere but fearful that I'd end up in the same situation. <br /><br />I wish there was an easier understanding of this diseas. We'd all feel better faster... that's for sure!Anonymoushttps://www.blogger.com/profile/03667521490706435608noreply@blogger.comtag:blogger.com,1999:blog-7505202305821415305.post-86149492232789003622012-10-12T12:56:44.149-07:002012-10-12T12:56:44.149-07:00To be perfectly honest, I have never heard of Mayo...To be perfectly honest, I have never heard of Mayo helping someone with Fibro in our local center (Rochester, MN). I think that a GP who is open minded, knowledgeable and willing is by far more important than any specialist at this point. I saw a Rheumatologist a few years ago and while he did diagnose me, he didn't help me get better, in fact he forced medications on me that I had already gone through. It was a worthless ordeal in my opinin. <br /><br />I am praying and praying that neurologists pick us up here shortly. They are the key to this as many neurologists also study sleep behaviors and that is vital to us. Darlahttp://www.werlivingfreestore.comnoreply@blogger.com