Hello, I am 41 and have had health problems for over 25 years. I believe that I have fibromyalgia, but my doctors tell me that they don’t want to diagnose me for fear of the label and not getting good healthcare in my life bc of the diagnosis. I have chronic, widespread pain. I ALWAYS hurt…some days more than others. I feel as though I can not be the mom I want to be or the wife…much less work. I am tired of being made to feel crazy for having constant pain. I have been diagnosed with RA. My rheumatologist thinks my RA is under control and has told me that everyone has aches and pains and that I just need to deal with it or get a new rheumatologist. Needless to say, I am getting a new rheumatologist but am having a hard time finding someone in my area that understands fibromyalgia. I am pleading for any info I can get. How do I find a good support group, a good doctor, good alternative medicines? PLEASE help.
Help please! No diagnosis yet, but believe I have firbromyalgia
- Thread starter KaseyF63
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Hi Kasey. You have found a good support group here on this forum, so there's one thing for you already. 
As for whether or not you have fibromyalgia, I want to tell you that it's very dangerous to diagnose yourself or make that assumption because there are so many other disorders and illnesses that have very similar symptoms to fibro, and unless you get tested for those and come clear on those tests, you don't know what you have. If you had something else and just decided for yourself that you have fibro you could be missing out on treatment that might be vital to you.
If you have RA, then I can't help but wonder if the symptoms you think are fibro are really RA? And why does your doctor say your RA is under control when you are in so much pain? Maybe if you tell us more it will help.
Finding a doctor who understands fibromyalgia is almost impossible unless you find one who has it themselves, which is very rare. However, it doesn't really matter. No doctor can make the fibro go away, and mostly all they do is prescribe drugs that are unlikely to help you unless they are strong and/or opiate drugs that are highly addictive and so should be avoided. The only reason to have a diagnosis at all is for something to write on insurance forms.
There are a lot of things you can do that may mitigate your symptoms, and we can help you with that. What a doctor can do, beyond referring you for tests or prescribing drugs or physical therapy, is basically nothing.
I don't have any idea why your doctor says you wouldn't get good health care if you had a fibro diagnosis? I have never heard of that, and can't imagine why that would be true.
Best idea is to get tested for all of the many other things that can cause similar symptoms to fibro, such as Lyme, lupus, MS, ALS, allergies, and several others. In the meantime, check out this post and start your own experimentation with things you can do on your own that may help.
Welcome to the forum and I hope we can be of use to you. We're here to support and inform one another.
www.fibromyalgiaforums.org
As for whether or not you have fibromyalgia, I want to tell you that it's very dangerous to diagnose yourself or make that assumption because there are so many other disorders and illnesses that have very similar symptoms to fibro, and unless you get tested for those and come clear on those tests, you don't know what you have. If you had something else and just decided for yourself that you have fibro you could be missing out on treatment that might be vital to you.
If you have RA, then I can't help but wonder if the symptoms you think are fibro are really RA? And why does your doctor say your RA is under control when you are in so much pain? Maybe if you tell us more it will help.
Finding a doctor who understands fibromyalgia is almost impossible unless you find one who has it themselves, which is very rare. However, it doesn't really matter. No doctor can make the fibro go away, and mostly all they do is prescribe drugs that are unlikely to help you unless they are strong and/or opiate drugs that are highly addictive and so should be avoided. The only reason to have a diagnosis at all is for something to write on insurance forms.
There are a lot of things you can do that may mitigate your symptoms, and we can help you with that. What a doctor can do, beyond referring you for tests or prescribing drugs or physical therapy, is basically nothing.
I don't have any idea why your doctor says you wouldn't get good health care if you had a fibro diagnosis? I have never heard of that, and can't imagine why that would be true.
Best idea is to get tested for all of the many other things that can cause similar symptoms to fibro, such as Lyme, lupus, MS, ALS, allergies, and several others. In the meantime, check out this post and start your own experimentation with things you can do on your own that may help.
Welcome to the forum and I hope we can be of use to you. We're here to support and inform one another.
My advice for managing fibromyalgia (especially for newcomers)
I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...
www.fibromyalgiaforums.org
Allglory2God
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Well. While I can't offer you any advice because we all respond to different modalities in different ways. What I can say with confidence is that you are in the right place to get great answers to all of your questions. Good luck and welcome aboard!
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Hi and welcome, Kasey,
We can see this in the criteria: The 2016 ACR criteria expressly say even if fibro is diagnosed, doctors should try to make sure every thing else is excluded. The 2022 UK guidelines are based on those, but leave that bit out, and I'm certain that's to save "money", maybe also to save "worrying" etc.
I believe we can also see US insurances using it when they pay for the - sham - "FM/a-test", to try to get people from seeking exclusions thoroughly.
As you have no diagnosis, those criteria/guidelines can help you make sure you're not barking up the wrong tree with fibro. They cannot make sure you have nothing else, that's something we need all the specialists for. There we just have to be careful not to jump too deeply into their treatment ideas if we're not sure it fits.
"Alternative" medicines is I spose my speciality, cos I've researched "everything" that has a certain degree of medical evidence or plausibility in depth. However diet and supps helped me for several areas, but not specifically pain or fatigue. For most symptom areas, describing and tracking each single symptom (only occasionally symptom groups), identifying and preventing or alleviating triggers was the most important basis. Aside from that, stretches, acupressure and a massager have brought my local pains down to zero.
Here you will be able to describe your symptoms and get as many ideas as you can take.
Trying to add to the good answers above, I'd say there's some grains of truth in this. Doctors and patients alike tend to blame (too?) many symptoms on fibro, implying it's not worth trying to do anything about them. In my/our experience there is a lot of ways you can try to work on each single symptom. However as @sunkacola says it won't be the docs that can help us with this much. What they would however help with the less they believe it is fibro is to exclude everything else.
We can see this in the criteria: The 2016 ACR criteria expressly say even if fibro is diagnosed, doctors should try to make sure every thing else is excluded. The 2022 UK guidelines are based on those, but leave that bit out, and I'm certain that's to save "money", maybe also to save "worrying" etc.
I believe we can also see US insurances using it when they pay for the - sham - "FM/a-test", to try to get people from seeking exclusions thoroughly.
As you have no diagnosis, those criteria/guidelines can help you make sure you're not barking up the wrong tree with fibro. They cannot make sure you have nothing else, that's something we need all the specialists for. There we just have to be careful not to jump too deeply into their treatment ideas if we're not sure it fits.
Like sunkacola says this is a really good online one. If you mean a real life one: My wife also wished (preferred?) me to find one, but the nearest is too far; I was told by the woman who gave up leading the one in my town that it'd been one heck of a strain, full of misery, no good spirit, and those 10 I met in the fibro clinic weren't people that would be good for me either. But you could use just a web search or additionally our erstwhile good, now a bit out of date resources on our main site to find live support groups and doctors that are supposed to know their way around around fibro, if you do need more than this. What else you can do depends a bit upon where you are in the world. But here many rheumatologist will pretend they know their way around it fibro, and claim to have many fibro patients, but don't really help much. In my case my fibro clinic provided many types of PT / treatment to try out, which was interesting, but as an active patient I didn't learn much that was more helpful than I already knew. More specific things I learn from the forums, good websites and youtube. My experience is that more important than a good doctor are good physios to learn from and then take over and do things ourselves.
"Alternative" medicines is I spose my speciality, cos I've researched "everything" that has a certain degree of medical evidence or plausibility in depth. However diet and supps helped me for several areas, but not specifically pain or fatigue. For most symptom areas, describing and tracking each single symptom (only occasionally symptom groups), identifying and preventing or alleviating triggers was the most important basis. Aside from that, stretches, acupressure and a massager have brought my local pains down to zero.
Here you will be able to describe your symptoms and get as many ideas as you can take.
Thank you to everyone! I really appreciate th feedback and input. I will give some more details, so that you know where I have been, what I have tried, etc. I have had chronic migraines since I was 14 (I am now 41). I had a couple neurologists that have treated me in the past. One (pediatric neurologist) from 14-20 and then 2 others bc we moved from wichita, KS to Kansas City, to Oklahoma City. We are now back in Wichita. With these chronic migraines, I have also been to MAYO clinic and Diamond Headache Clinic (in Chicago). I was at MAYO in the late 90s and Diamond Headache clinic in chicago a total of 9-10 times bc I had migraines that wouldn’t break for weeks on end. After I had my first child (in 2013, at the age of 30) I started having constant body pain and exhaustion. Some days were better than others, some days I could barely get out of bed. At the time, I attributed it to not getting enough sleep and having a colicky baby. I had my daughter 3 years later. Pain continued, but still assumed it was bc I had young children. Last year, my youngest when to kindergarten and I decided to really “take on” my health, as it just keeps getting worse. I cannot work bc of the severity of my pain on a lot of days. Some days I am in too much pain and exhausted and can barely walk/remain upright without having to take constant “breaks”. Which, don’t really even help. When we moved back to wichita 7 years ago, I found a good PCP with a GREAT PA. She has been the one to lead me through everything, encourage me and believe in me. I have been to a gastroenterologist and have minor IBS, but it is the least of my symptoms. They did blood tests, a colonoscopy and endoscopy. After that, I went to a dermatologist bc I had an odd mark in my skin that wouldn’t go away. When they biopsied it, it came back with a marker for a potential autoimmune disease (I can remember what they called it 
). Dermatologist proceeded to send me to a rheumatologist. This was 1 1/2 yrs ago. My rheumatologist does regular blood work. My blood work has always been fine. After about 6 months, he diagnosed me with RA. I am currently taking (hydroxychloroquine for about a year, and leflunomide for about 4 months, as well as Cyclobenzaprine for my RA. He feels as though the meds are helping and just recently told me that I need to stop researching things and just take my medicine as are and deal with my “aches and pains” as he thinks they are centered more around connective and soft tissue. He also said that he has aches and pains too and I am getting older and need to stress less. He also told me I could continue to take my meds, as are and see him again 4 months or get a 2nd opinion and we would be done. He has never appreciated my questions or been willing to discuss alternative treatments being helpful or not helpful. He has mentioned fibromyalgia, but got frustrated with me when I asked about a diagnosis and said I was too young to diagnose with that and that doctors in the future would not give me the proper medical care if that was my diagnoses. With being in Wichita, KS, I am wondering if we are behind on the updated knowledge of fibromyalgia…even though there is tons more to discover. My PA, whom I love, said that she agreed I should find another rheumatologist, as I must have bruised is ego since he couldn’t figure anything else out. Said it would be toxic to go back to him. So, we will see what the next rheumatologist says. My PA has also never diagnosed me with fibromyalgia, but has mentioned it many times over the years as a possibility. I had an appointment last week and she put me on Savella to see if it would help. So, my current list of meds include buproprian for anxiety as well as hydroxyzine (if my anxiety is too bad…I only take this rarely…maybe once a month), levothyroxine for hypothyroidism, hydroxychloroquine and leflonomide for RA, Cyclobenzaprine for RA and sleep problems, Dilauded and promethazine (only when I get my migraines), and now Savella. I see a chiropractor regularly, do gentle yoga 3 times a week in a class and then 2-4 times a week on my own. I also meditate and try to do that on most days). I have tried acupuncture in the past (for the migraines…although it was pre-kids), massage therapy (pre kids as well). I hope that these details help in understanding where I am. I have started listening to a podcast called “fibromyalgia podcast” and just ordered a Mayo clinic book to learn more about everything. Again, I have not been technically diagnosed, even though I have had several doctors mention that as an option. Does anyone know of good podcasts or books to read? My main symptoms currently bare body pain, exhaustion, and brain fog. Oh…I have also been getting nerve pain in the last few months. Mostly in my hands and feet, but also happens here and there in the day in my arms and legs. Thank you ahead of time for all of the suggestions and understanding! One more question (as I just thought of it). Has anyone ever been on LDN or seen a functional doctor?
Thank you again to everyone for the support and advice!
). Dermatologist proceeded to send me to a rheumatologist. This was 1 1/2 yrs ago. My rheumatologist does regular blood work. My blood work has always been fine. After about 6 months, he diagnosed me with RA. I am currently taking (hydroxychloroquine for about a year, and leflunomide for about 4 months, as well as Cyclobenzaprine for my RA. He feels as though the meds are helping and just recently told me that I need to stop researching things and just take my medicine as are and deal with my “aches and pains” as he thinks they are centered more around connective and soft tissue. He also said that he has aches and pains too and I am getting older and need to stress less. He also told me I could continue to take my meds, as are and see him again 4 months or get a 2nd opinion and we would be done. He has never appreciated my questions or been willing to discuss alternative treatments being helpful or not helpful. He has mentioned fibromyalgia, but got frustrated with me when I asked about a diagnosis and said I was too young to diagnose with that and that doctors in the future would not give me the proper medical care if that was my diagnoses. With being in Wichita, KS, I am wondering if we are behind on the updated knowledge of fibromyalgia…even though there is tons more to discover. My PA, whom I love, said that she agreed I should find another rheumatologist, as I must have bruised is ego since he couldn’t figure anything else out. Said it would be toxic to go back to him. So, we will see what the next rheumatologist says. My PA has also never diagnosed me with fibromyalgia, but has mentioned it many times over the years as a possibility. I had an appointment last week and she put me on Savella to see if it would help. So, my current list of meds include buproprian for anxiety as well as hydroxyzine (if my anxiety is too bad…I only take this rarely…maybe once a month), levothyroxine for hypothyroidism, hydroxychloroquine and leflonomide for RA, Cyclobenzaprine for RA and sleep problems, Dilauded and promethazine (only when I get my migraines), and now Savella. I see a chiropractor regularly, do gentle yoga 3 times a week in a class and then 2-4 times a week on my own. I also meditate and try to do that on most days). I have tried acupuncture in the past (for the migraines…although it was pre-kids), massage therapy (pre kids as well). I hope that these details help in understanding where I am. I have started listening to a podcast called “fibromyalgia podcast” and just ordered a Mayo clinic book to learn more about everything. Again, I have not been technically diagnosed, even though I have had several doctors mention that as an option. Does anyone know of good podcasts or books to read? My main symptoms currently bare body pain, exhaustion, and brain fog. Oh…I have also been getting nerve pain in the last few months. Mostly in my hands and feet, but also happens here and there in the day in my arms and legs. Thank you ahead of time for all of the suggestions and understanding! One more question (as I just thought of it). Has anyone ever been on LDN or seen a functional doctor?Thank you again to everyone for the support and advice!
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Hi Kasey,
When you write a long post like that without any paragraph breaks it makes your post very difficult for some of us, including myself, to read.
Please consider putting paragraph breaks in your posts. Thanks.
When you write a long post like that without any paragraph breaks it makes your post very difficult for some of us, including myself, to read.
Please consider putting paragraph breaks in your posts. Thanks.
Last edited:
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Any doctor who says "you're done" if you want to get a second opinion is far more concerned with their own ego than with your health. Also true of any doctor who is unwilling to take questions seriously and do their best to answer them My advice is get a different doctor.
This is utter baloney. No one is "too young" to get fibro. And it is completely untrue that doctors won't give you good treatment if you have that diagnosis. This is either a lie or is ignorance, and whichever it is, you need a different doctor.
Agreed.
You are also on a whole lot of medications. Some of them may be causing some of your symptoms. This is only my opinion, but it is borne out by my own experience and that of others I know who have perplexing symptoms or who have fibromyalgia, the more medications you take the more likely you are to be toxifying your system and making things worse. The human body is not designed to have to deal with a half dozen or more medications all at once and the fewer you can take and still stay alive, the better.
Did you read the post I referenced above? There are so many things you can do for yourself that could result, as they have for others, in your being able to take far fewer medications, and be healthier. I always think that when it comes to medications, it's best only to take the ones that you literally cannot live without, and find alternative treatments whenever possible.
I absolutely do not recommend ldn, which is far more hype than function.
I have not seen a functional medicine doctor, as there are none where I live, but from what I know they can do a lot that regular doctors cannot, and if there's one in your area why not give it a try.
Allglory2God
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Hi. That is quite the journey you have been on. God bless your tenacity.
After my journey with pharmaceuticals, opiods, muscle relaxers and much, much more. I have with a physicians approval and guidance eliminated all narcotics and muscle relaxers. My pain level immediately dropped from a 7-8 scale to a 4-5. This is only my reaction to eliminating truely unnecessary pharmaceuticals. As you might expect I am ecstatic.
What I have also discovered after many trials, PT and no matter how gentle I stretched. I would pay dearly with weeks and weeks of pain. So I took up Tia chee* and slow walks which have helped me stay active. And I don't have residual pain from the effort. Don't get me wrong. I still have pain, bad days, migranes, and insomnia and increased anxiety. Plus exhaustion.
Right now I'm using belley laughs, relaxation techniques (lamze works best) deep breathing and really listening to my body. Lots of breaks and rest.
You are in good company here and will find alot of experienced advice. Good luck and success on your journey.
See you in the threads!
After my journey with pharmaceuticals, opiods, muscle relaxers and much, much more. I have with a physicians approval and guidance eliminated all narcotics and muscle relaxers. My pain level immediately dropped from a 7-8 scale to a 4-5. This is only my reaction to eliminating truely unnecessary pharmaceuticals. As you might expect I am ecstatic.
What I have also discovered after many trials, PT and no matter how gentle I stretched. I would pay dearly with weeks and weeks of pain. So I took up Tia chee* and slow walks which have helped me stay active. And I don't have residual pain from the effort. Don't get me wrong. I still have pain, bad days, migranes, and insomnia and increased anxiety. Plus exhaustion.
Right now I'm using belley laughs, relaxation techniques (lamze works best) deep breathing and really listening to my body. Lots of breaks and rest.
You are in good company here and will find alot of experienced advice. Good luck and success on your journey.
See you in the threads!
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Hi again Kasey,
I agree with all of the above and again can't add that much, all said so far, except answer your explicit questions.
For a book overview with recommendations see my short reference thread here: Books on Fibromyalgia
One of my own (many) short "books" here (@Auriel once sort of called it a 'booklet'):
www.fibromyalgiaforums.org
Resources on this site here:
www.fibromyalgiaforums.org
But as sunkacola says: Before you haven't implemented all of that advice post, it's over the top to look for any "expert" help. Once we have implemented all of it, we can judge the 'experts' better and let them serve us instead of serving them. L DN is - I also think - no starting place, too risky. It is my last resort, just in case it's more positive for my fatigue than negative for anything else. (After many 100s of trials and even 100s of self-treatments every day there's nothing else I can find anywhere. Last webinar cost me 50 hours and lots of stress, and aside from a few useful thoughts, only methylene blue was a new one - but it harmed me, altho I've heard about 8 functional docs say it doesn't.)
I agree with all of the above and again can't add that much, all said so far, except answer your explicit questions.
That'd be Tami Stackelhouse? I do think she's OK, but she hasn't been a major source for me. I've taken part in many day or week long webinars / "summits" on fibromyalgia, as well as associated conditions, symptom complexes and my co-morbidities. Last thing that helped me a lot was new ideas about sleep.
For a book overview with recommendations see my short reference thread here: Books on Fibromyalgia
One of my own (many) short "books" here (@Auriel once sort of called it a 'booklet'):
How to grieve, self-motivate, track symptoms, hunt triggers, decide & follow thru on treatments
See also the "spoilered"/structured version ... shall I delete one of these? Lists of causes/triggers, symptoms & treatments can provide us a bit of orientation. They can help us even if we don’t change what we do, by changing our mindsets, e.g. “acceptance”. But we can normally only improve...
www.fibromyalgiaforums.org
Resources on this site
Researching docs and support groups in Leeds just now duckduckgo pointed me to... this site! (No I don't ever use the nosy search engines.) Just goes to show that we don't even know all the great resources there are here. In the "parlour", if this is the living room and the kitchen? (OK: I...
www.fibromyalgiaforums.org
No functional docs where I live in the US sense. I've considered telemedicine, but good ones want/need to see you. I've tried several alternative health practitioners here, but they weren't that familiar with fibro and their ideas didn't do anything or harmed. I've learnt from manual therapists, and occasionally docs have had an idea I could work with, but more and more I'm coming to the attitude to need to be my own researcher / guinea pig, doctor and therapist using all the stuff I find online, I need to be in control, to not be harmed over and over again.
But as sunkacola says: Before you haven't implemented all of that advice post, it's over the top to look for any "expert" help. Once we have implemented all of it, we can judge the 'experts' better and let them serve us instead of serving them. L DN is - I also think - no starting place, too risky. It is my last resort, just in case it's more positive for my fatigue than negative for anything else. (After many 100s of trials and even 100s of self-treatments every day there's nothing else I can find anywhere. Last webinar cost me 50 hours and lots of stress, and aside from a few useful thoughts, only methylene blue was a new one - but it harmed me, altho I've heard about 8 functional docs say it doesn't.)
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Well said.
You are best served by going on your own journey of experimentation and discovery to see what you can do for yourself rather than waiting for a doctor of any type to help you, simply because it is far more likely to give you information about what works for you.
BlueBells
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Hi @KaseyF63
How are you going? I've seen you come on here, but not posting.
I wondered if you were a bit hesitant after what Sunkacola suggested regarding paragraphs.
I very much agree with him. I had several attempts to read, and found myself overwhelmed, therefore, I'm not sure I go the lot completely. I actually tried holding a piece of paper up to the bottom of each line, but it still was difficult.
He is suggesting, he is not criticising or picking on you. I understand if you felt that way, so I am letting you know you are most welcome here, and please, we look forward to you sharing and becoming involved with the discussions.
To be honest, I would have suggested if he hadn't. Why? Because I believe everyone's post is important, and if simply pressing the 'enter' key makes it so much easier to read that post, the forums are all the better for it.
Looking forward to hearing how you are going
@sunkacola
Hi @BlueBells,
I appreciate your response. No, I was not overwhelmed by anyone’s response. I think I was overwhelmed when I wrote my first couple posts.
I had just had a rheumatologist be very closed minded and degrading to me, and I found this forum when I was somewhat in a panic of not knowing what to do.
I feel that in the last few weeks, I have come to terms with feeling out of control and worried when I wrote the first post. I think I just felt at a loss…as I have felt many times during this health journey.
However, I am learning so much and am doing tons of research. I feel like I am getting to an acceptance point.
I also believe that the savella I started a few weeks back is having a big impact on my energy. Within that, I have been able to have a clearer head in working out what my next baby steps are in this fight.
I have been able to do my gentle yoga 3xs a week and have added regular yoga to my routine. The days that my exercises are more difficult, I definitely have to save the rest of my energy for when my kids come home from school.
Basically, I am learning to listen to my body. I have also started with a psychologist who has been wonderfully supportive and helped “coach” me, keeping me on track and putting my thoughts and plans into action.
I will absolutely be on here more often and posting in the future.
I live in Wichita Kansas and am wondering if anyone knows how to go about finding a doctor that has fibromyalgia themself? Any advice in this area would be wonderful!
Thank you to all of you that have taken the time to reply and help me on the beginning of my learning and understanding.
I appreciate your response. No, I was not overwhelmed by anyone’s response. I think I was overwhelmed when I wrote my first couple posts.
I had just had a rheumatologist be very closed minded and degrading to me, and I found this forum when I was somewhat in a panic of not knowing what to do.
I feel that in the last few weeks, I have come to terms with feeling out of control and worried when I wrote the first post. I think I just felt at a loss…as I have felt many times during this health journey.
However, I am learning so much and am doing tons of research. I feel like I am getting to an acceptance point.
I also believe that the savella I started a few weeks back is having a big impact on my energy. Within that, I have been able to have a clearer head in working out what my next baby steps are in this fight.
I have been able to do my gentle yoga 3xs a week and have added regular yoga to my routine. The days that my exercises are more difficult, I definitely have to save the rest of my energy for when my kids come home from school.
Basically, I am learning to listen to my body. I have also started with a psychologist who has been wonderfully supportive and helped “coach” me, keeping me on track and putting my thoughts and plans into action.
I will absolutely be on here more often and posting in the future.
I live in Wichita Kansas and am wondering if anyone knows how to go about finding a doctor that has fibromyalgia themself? Any advice in this area would be wonderful!
Thank you to all of you that have taken the time to reply and help me on the beginning of my learning and understanding.
Kelly Anne
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Thanks for explaining that BlueBells. I must say I did exactly the same thing on my first post. I wasn't sure if I typed enter that my message would be posted. And maybe I was rather nervous as well. I think it just takes a little time and help from the previous members to understand protocol. Thanks again.
BlueBells
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Hi @Kelly Anne
I'm still learning myself, and I was passing on what I have learnt.
I'm so pleased you have a great psych, that makes so much difference. I think for me, simply having a name after decades of not knowing, having doctors indirectly saying 'your nuts, it's all in your head', it's becoming easier to accept and work with, rather than against.
I am not aware that I get pain nor insomnia, so at times I still feel a bit 'fake' being on here, but I tick the boxes, and clinically diagnosed, and the support here is phenomenal.
Re doctors, I'm in Australia, not much help
There are a lot of Americans on here though.Take care oxoxox
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Hi Kasey - hmm, that's a steep one, it's hard enough finding a doc that is slightly more on the knowledgeable side...
Actually, when I read or listen to stuff from docs that have it themselves, the tendency is often "had". Same as when non-docs "had" it, they believe they cured it, so can you, which when I look at what helped them it doesn't do that for me. But maybe you're looking for exactly that, since someone who can practice fairly normally again will have been pretty much "cured" - whilst unfortunately my exhaustibility is far too severe for their fixes.
Two authors that are docs with fibromyalgia are Devin Starlanyl and Ginevra Lipton and their books are often highly recommended.
However it's usually true that anyone that's more in the know will have more ideas what to do. Best start however is here, like sunkacola's advice post.
To find a knowledgeable doc we can contact with people like support groups in our area, do web searches, phone and ask likely offices (but they will usually overestimate themselves).
Our out-of-date list of docs in Wichita you'll find on our main site here (only internal links are allowed):
Fibromyalgia Doctors in Wichita, Kansas. Some of them are still practicing, as even a quick comparison to the lists on the yellowpages and webmd shows.
Your claim to fame in Wichita is/was Dr. Frederick Wolfe at the U of KS, whom I very much respect as a fibro expert. He was responsible for developing the ACR criteria and I think he has a sober perspective. Daniel Clauw, another leading expert, mentions that he was someone who emphasized the "importance of listening to our patients". One of Wolfe's last interviews is on news-medical - he died on the 5th, 2 weeks ago. But he won't have been alone, there will be an expert centre there.
Psychologytoday pages don't contain information altho they turn up loads in search engines.
On youtube there's a therapy office with lots of short ad type videos, not sure if they're something I'd try.
The Wichita Eagle in 2014 said a fibromyalgia support group had been freshly formed, I doubt that'll still exist, it's not on the page of the Independent Living Resource Center any more, but you could ask there.
Fun looking stuff like that up once in a while.
I could get envious how many resources other people may have, but actually after getting a bit of help from good manual therapists, I prefer being out on my own with the forum, web & youtube help.
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