#fibromyaliga

[gentlemanbutch]

haaaa just found out that the prick who told me nothing is wrong with me after I sent him my medical history and current long COVID symptoms has a pattern of doing this!

I mean I didn't think this was so controversial but do 👏 not 👏 go 👏 into the 👏 medical 👏 field 👏 if 👏 you're 👏 going 👏 to 👏 dismiss 👏 patients' 👏 pain

[punisheddonjuan]

So around a month ago the big NIH study on ME/CFS, in the works for eight years, was finally published and it was immediately met with hostility. I wrote about my initial reaction here and here. These were just some off the cuff remarks after my initial read through, I haven't had the energy to write on the problems with it at any depth, thankfully someone else has. This is a long one, but the criticisms are problems that have plagued research into ME/CFS for years: poor or no controls, loose diagnostic criteria, poor methodology and biased researchers. I want to focus on that last one with some excerpts, because it really is egregious.

As a rheumatologist, Walitt infiltrated and embedded himself into the world of ME (and now also Long COVID and Gulf War Illness) via Fibromyalgia. Although Walitt seemed to be doing a reasonable, though ultimately unconvincing, job feigning compassion toward his Fibromyalcgia patients, whom he paraded around in his presentations like circus attractions, his unhinged views are aggressively hostile toward ME and Fibromyaliga patients; he has been vocal with his conclusory view that both ME and Fibromyalgia are somatoform. "The discordance between the severity of subjective experience and that of objective impairment is the hallmark of somatoform illnesses, such as fibromyalgia and chronic fatigue syndrome." For well over a decade now, Walitt has been establishing himself as an ME and Fibromyalgia enemy who considers the symptoms of ME and Fibromyalgia as within the “range of normal” and not worthy of validation or treatment because, in his opinion, they do not constitute medical entities. What is abnormal, in his view, is the patients’ beliefs that they are suffering from a disease. As if it is not bad enough that an NIH researcher has been allowed to build a career on such propaganda, Walitt works hard to convert his colleagues whom he claims are relieved that they no longer have to pretend that Fibromyalgia is pathological after he “say[s] [his] message.” This disturbing ten-minute Walitt interview about Fibromyalgia will leave little to the imagination in terms of Walitt’s predisposition. I analyzed the ghastly views he expressed in this interview when independent advocates protested his involvement with the study. Another good example of Walitt’s disturbed views on Fibromyalgia and ME is an opinion paper that he co-authored with his biopsychosocial soulmate, the late Dr. Frederick Wolfe: “Culture, science and the changing nature of fibromyalgia.” Somebody saved a copy of this paper on the Wayback Machine.

In this paper, in which he quotes Wessely and Shorter, Walitt equates Fibromyalgia with Neurasthenia—i.e., “the vapors,” “depression of spirit,” “hypochondriac affections,” “effort syndrome,” etc. Neurasthenia is a psychologized fatigue concept that had started out as a central-nervous-system disorder and was the predecessor of Holmes’s and Fukuda’s “CFS.” Walitt referred to Wessely’s framing of ME as Neurasthenia in the slick and insidious “Old wine in new bottles: neurasthenia and M.E.” In his paper, Walitt expresses his belief (no science required) that Fibromyalgia is psychocultural, i.e., “shaped primarily by psychological factors and societal influences” and is associated/comorbid with psychological illness. Throughout the paper, Walitt labels Fibromyalgia—in addition to psychocultural—psychological, psychogenic, psychosomatic, a Somatic Symptom Disorder (i.e., somatoform), a social construct, etc. He further claims that Fibromyalgia is related to psychological disorders (including major psychopathologies), psychosomatic symptoms, and personality disorders and that it is a convenient, because socially acceptable, diagnosis for mentally ill patients to hide behind. According to Walitt, Fibromyalgia patients are not to be trusted because they have too many symptoms that are too severe and too unusual while appearing too healthy resulting in physicians’ shunning of them. Walitt laments the failure of Fibromyalgia as a psychological concept and strongly disapproves of what he calls the “success” of Fibromyalgia. He sounds practically paranoid when he blames “powerful societal forces,” which he claims have been “marshalled,” for propping up the “‘real disease’ message.” Walitt frames Fibromyalgia as a con job by patients and patient organizations whom he claims were enabled by other malevolent actors and forces, such the American College of Rheumatology (guilty for naming and defining it), governments, disability and pension systems, physicians, the legal and academic communities, scientific organizations, pharmaceutical companies, the Internet, and ICD codes. That’s an impressive list. Imagine if patients indeed had the allyship of those stakeholders and systems! There is no other characterization of Walitt’s Fibromyalgia views than deranged. And, of course, because ME and Fibromyalgia are basically the same to him, all of this applies to ME according to Walitt’s twisted views. As sordid as the government’s record regarding ME has been, the intramural NIH study has opened a new, even darker chapter for patients. Putting Walitt in charge of this study despite his unmistakable bias against ME patients is just one item on a long list evidencing an atrocious track record on the part of the federal health agencies, including NIH, when it comes to ME. It warrants a reminder that there have been calls by federal health officials to silence critical patient voices as well as actual threats against members of CFSAC—the since dissolved federal Chronic Fatigue Syndrome Advisory Committee—who refused to toe the party line in addition to many actions by federal officials designed to thwart patient advocacy. Walitt’s unyielding belief that ME, Fibromyalgia, and other diseases are reflections of an incorrect inner understanding of patient body’s capabilities seems to have grown only stronger over the years. His extremism will likely be weaponized against patients for decades to come unless NIH stops involving him in these studies. So far, NIH has circled the wagons to defend him and even promoted him by moving him from the National Institute of Nursing Research (NINR) to the more prestigious NINDS and making him head of the Interoceptive Disorders Unit.

When you put people like this in charge of your studies, it's because you wanted a certain predetermined outcome. Full stop. The rest of this is really quite good and covers a lot of ground, including the existential risk to ME patients' income this study poses and the implications for Long Covid sufferers.

[siverfanweedo]

i am gonna take a second here and talk about fibromyalgia.

The first time i ever heard about it was in the show "haters back off" it was played as a joke. Note the show was so bad i legit felt like my brain had left my body but.... i will never forget it. The jokes how it was talked about how they said the word wrong and how that is how i spell it fibro my alge uh. The first time this illness was presented to me it was played as a joke someone who clearly it fine and just wanted special attention the only person who took it seriously was someone who thought disabilities where sexy... this was... probably not even a year before my work injury.

Fibromyaliga can be triggered in many ways. Trauma being an actual bit of it. The thing is, there is no damage for firbo despite the pain in all my joints there isn't damage ( note it seems mussel pain is more common but i have joint pain ). I got hurt and work and here i am and i have no doubts childhood trauma never helped anything either. Fibro also isn't just like pain. It's chronic fatigue i feel i don't need to explain that to much i reblogged the fatigue scale not to long ago.

i also have, ibs, chronic headaches/migraines, brain fog.

I have learned as well many things are corbid with firbo. ADHD, Autism, PTSD, POTS, non 24-7 sleep wake disords, the list probably goes on.

My thought here is. Fibromyaglia is weird and JKR making light of ir probably treating it as a fake 'wanting attetion' kinda thing is disgusting. It makes me feel hurt and unsafe in a world that already feels like it judges me and expects me to be abled cuz i look it.

All that stuff her 'villain' has i pretty much have it. It changed my life so much the whole thing was really traumatic. I was lucky i got diagnosed but it took 3 years. I lost all my dreams in those 3 years i had to restart my life i lost so much. I don't like to put suffering at the center of my disabled experience. I have learned to find new joy in life i have leard to work through the pain and tiredness and how to just live.

I don't want what i have been through to be mocked i don't want it to be painted as suffering. Cuz like once you paint a disabled life as suffering it quickly leads abled people to think eugenics is okay.

this like really got out of hand i guess but my main take away here is. DO NOT like JKR add to the dialogue of fibro or CFS/ME or allodynia as fake attention seeing BS. Learn about all these things on your own and fucking educate people if you can. DO NOT talk over disabled people while doing so but please protect us. JKR target has never soly been trans women. She has been an ablest fuck for years as she targeted autstic trans men years before her 2020 tweet, and oh guess what lots of austic trans men have fibromyalgia ain't that neat.

BUT YEAH!. uh fuck JKR my illness are real.

[boycritter]

anyone know hwerei can find wizard doctor to give me potion of no fibromyaliga i am iwlling to pay 100 gold doubloons

[lelibug]

(via Fibro Bunny)

Fibro Bunny | BLOG | Phoenix DragonQueen TODAY - One Of Those Days I feel like I Am Utterly TRAPPED  & IMPRISONED by my body, subjected to Torture & Being Devoid Of All Personal Self & ZERO Enegry... #Fibromyaliga #LongCovid #chronicillness  #ChronicPain

[aimeereese]

Be Clear, Courageous and Focused... www.aimeereese.com/single-post/2018/04/08/Be-clear-courageous-focused

[paddypatt-blog]

I received this today from a customer and good friend of mine who put her trust in the fact that I had something that could possible help her feel better than she was. Erica has been taking MOA for nearly a year now and her testimony below is great. She's since added Rejuveniix for more natural energy. The power of nutrition is real. 🤙 Moa testimony I am a 30 something busy mum of 3, a wife and currently going into my third year of a degree. Oh yeah and I also have fibromyalgia. I started to take Moa last summer after a recommendation from Paddy. Over the last 12 months I have continued to take the Moa and can honestly say that this stuff is nothing short of a miracle. So I was slightly apprehensive and generally tend to stay away from 'fad' nutrition and so I decided to do my own test, I kept a log of how I felt whilst taking it and whether there was any difference when I didn’t. The result....I will never not take Moa again. Any fellow fibro sufferers will know that there is currently no cure for this cruel illness however I urge anyone with or without fibro to try Moa for 2 weeks and there will be no turning back. It gives you an increased energy and mental awareness and helps to ilvaite some of the pain associated with fibro. Research associated with fibro suggests that a good diet and exercise are hugely effective when trying to lead a 'normal' life, by adding Moa to the mix I genuinely believe that we are giving ourselves a fighting chance of reaching this. #testimony #MOA #ARIIX #fibromyaliga #energy #natural #helpingothers #health #nutrition #family #changinglives #pain #effective #exercise #amazing

[talledschick]

I hate being young and sick and stressed. ALL THE TIME! I hate that my life revolves around my health and my crazy spine and joint issues. I hate that I'm 24 with athritis in my spine and joints. Everything is degenerating. My life is degenerating. My youth is degenersting. What happens when you spend your 20s living like a 80 year old? What does your 30s look like? Maybe being sick so young is like Benjamin button and each decade you get older the health stuff gets less bad... maybe? Maybe in my 50s I'll finally feel my age.

[consulting-celiac-in-the-tardis]

What I Want Doctors to Know About Fibromyalgia That's Not in a Textbook

New blog post! As I'm writing this post, I'm going through a fibromyalgia flare up, so it only seemed fitting to cover a topic I've been thinking a lot about lately: what I wish more doctors (not to mention the general public) knew about fibromyalgia that can't be found in a textbook or most Google pages.

Because the truth is, everyone with a chronic illness is different...and that is true of people with fibromyalgia. Equally important, there are nuances of living with fibromyalgia that can't be found in medical textbooks...and therefore aren't being told to most doctors-in-training. I've been fortunate to have a decent amount of OK experiences with doctors while making medical visits related to fibromyalgia...but I've also heard comments from medical professionals that made me feel even worse about my chronic pain. So in hopes of educating others - and particularly, educating those entering the medical field - here are seven things I want future doctors to know about fibromyaliga that aren't in a textbook.

1. I'm used to telling my fibromyalgia story over and over, so let me know if I'm going too quickly and need to include more detail.

2. Because I live with fibromyalgia every day, I sometimes don't know a certain symptom isn't "normal."

Feeling cold and tired 99% of the time? That's my normal.

3.  I may be able to do more or less than another patient of yours with fibromyalgia...but that doesn't make either of our conditions "more real."

4. My pain and symptoms can change drastically between days or hours, and sometimes there is no clear "trigger" I can point to.

5. And I understand that you need to ask questions to learn what triggers my flares, but sometimes it can feel like I'm being told my flares are my "fault" and something that I caused.

6. Placing my pain on a traditional pain scale isn't easy because I'm not sure I even know what "pain free" feels like.

So I will totally do that when asked...but understand that it's somewhat of a guess.

7. Fibromyalgia affects my mental health, too...and I appreciate when doctors ask how I'm doing mentally instead of just physically.

8. Yes, I know I am "young" to be diagnosed with fibromyalgia...but that doesn't make my pain less real.

(Read more about my fibromyalgia diagnosis story here.)

9. A lot of times (maybe even most times), I don't come to an appointment looking for answers. 

I know that fibromyalgia is a chronic illness, and I accept that there isn't a "cure" right now. But I am always looking for empathy and respect.

10. Please don't say that you "understand" unless you have chronic pain. 

You can know the symptoms of fibromyalgia, but unless you have it, you can't "understand" how it feels. And I get that you are trying to emphasize with me, but statements like, "That must be difficult" are more helpful for me.

Source

11. Even though you may not be able to "cure" my pain, it does make a difference when you treat me like a "regular" patient.

It matters that you treat my invisible illness with the same seriousness as a physical disease. It matters that you ask about my physical and mental wellbeing. It matters that you respect the knowledge I have about my own body just like I respect your knowledge as a doctor.

What I Hope You Take Away From This Post

If you have fibromyalgia, I hope that this post made you feel less alone and maybe even gave you a different perspective on what emotions may run through you during doctor's visits. And if you don't have fibromyalgia - and especially if you're planning on going into the medical field or are already in it - I hope this post gave you some extra insight into what living with fibromyalgia is really like and the kind of support we actually need from medical providers.

Me from around the age of my fibromyalgia diagnosis...

I've worked with some amazingly knowledgeable and respectful doctors in my time...and I hope that one day, those doctors are the norm. What is one thing you wish more medical professionals knew? Tell me in the comments!

via Blogger https://ift.tt/2RML8ac

[welcomelionheart]

HAY FRIENDS!

Thought I should rewind/update with how I felt on the first EPD shot, so I can encourage anyone going through it! I know everyone has different reactions-but maybe my random symptoms can help you know its normal to have them. Because quite honestly, there’s so many crazy things that happened…I can’t even remember them all and wish I could have prepared…

Sooooo here I am, talkin’ bout the thing I’ve dedicated tons of research and time and effort into so far, it seems exhausting already and I’m SUPER impatient for good results and I’m on month #6 and have had 3 out of 6 shots. Yeahhhhhh I’m SO IMPATIENT!

So if you haven’t read my other posts you can see my many diagnosis’ there or in my about section . BACKING UP: SHOT #1: APRIL 2018 So the first shot I talked about in my last couple EPD posts a little, but let me say….to be completely honest I didn’t want to be 100% honest about how MISERABLE it was, but it was. It was like I went backwards and felt worse and didn’t want to even acknowledge it to myself, because I had put such hope in it and didn’t want to be tempted to quit or consider the terrifying “what if this doesn’t work for me?”.

Critical Day and not pet free! My whole day represents the mess I left my room as I packed! lol…

The critical days were brutal. You are supposed to have no stress and sleep a lot during that time-guess what happened to me? I realized too late that I couldn’t sleep in the same house as our pet dog/cats because of pet danders that fly through the vents which could make you allergic. I thought blocking off the vents and staying in my room and only leaving for bathroom breaks with a mask on would be fine. NO IT WASN’T. The secretary told me if I stayed there I couldn’t have the shot. EEK!!

  So I packed in a fluster with a dust mask on… booked a hotel that promised hypo-allergenic in Toronto, and they were definitely not!! I drove 5 hours there and back with my Mom-was exposed to potent room sprays, hallways where dogs and cats would walk (pet-friendly hotel omg!!!), and ran out the door and into some hotel clients puff of smoke from a cigarette hit me in the face. It was literally like something from a twilight zone, after I read how careful you need to be especially with critical days. I then waited in the cold car-freezing-super stressed, uncomfortable, and angry while they tried to find another hotel that would be hypoallergenic. Didn’t happen. So we drove back and I

Feelin like a Freak!! lol

slept only a few hours in a cold shed with a heater that night. The next day, the shots weren’t painful-well maybe just like little bee stings hahaha. I got

Slept in our freezing shed in April where I made a tent to keep in heat from the heater lol!

one for environmental sensitivities, food sensitivities, and one for pain/fatigue. But as your body processes the shots? That’s when it starts to make you not feel so good. I took Imiprimine tons the next few days, and still couldn’t sleep for 3 days straight due to pain-although Imiprimine DID help me feel more capable to deal during the day.

My stomach didn’t seem to know what to do with the food, even on the specific regimen…because I couldn’t take digestive enzymes. I’ll get real personal and girly and say, I had my period and could barely walk-so that pain on top of the pain of the shot definitely compounded. And not being able to sleep on top of it, I cried a lot.

After the critical days-on day 10 I felt super sick and couldn’t stop drinking water and looked so preggo with so much water in my belly. Also, I recognized I seemed to have become very allergic to smoke (I felt sick/got stuffy nose) due to the random blowing it in my face at the hotel! 😦

Not impressed…lol

By this time, I saw that the sleep and lack of pain that had started showing up with my anti-infection/lymes rotating supplements disappeared completely-and I couldn’t go to bed “early” again, or sometimes-again-just wouldn’t sleep at all as I froze my face with ice packs. I wondered if it was because 3 weeks around the shot I am not allowed to take herbals (therefore I wasn’t fighting against infection). And what appeared in full debilitating force was this heavy depression I couldn’t seem to shake. Pain and chronic fatigue were super bad, mornings were terrible…I couldn’t get myself going… and again…those two months, I cried a lottttt.

  ***However: I saw my other doctor the other day and told him my reactions. My normal doc believes EPD can work for me so he supports it, and also said that if I have environmental sensitivities NORMALLY THE FIRST SHOT ISN’T PLEASANT. DANG! Wish I had known this to prepare, but it gave me more hope that these would go better…and they are starting to!***

Stay tuned because I’ve done two more shots since then andddd they’ve gone WAY BETTER and i’m excited to share that with you/encourage you that if you have tons of weird pain/any auto-immune disease etc and can���t figure out an answer for yourself…I think they can help you! You just have to be VERY patient and be VERY CAREFUL with the protocol. 🙂

REWIND: Awful 1st Shot! (LDA/EPD Immunotherapy for Lymes / Fibromyalgia / Auto-Immune Disorders etc) HAY FRIENDS! Thought I should rewind/update with how I felt on the first EPD shot, so I can encourage anyone going through it!

[codenameparabellum]

I recently had to explain what fibromyaliga was to someone who’s native language is not English. Although I explained it to them and they understood, it took a great deal of time to really think about what it was and put it in terms that people can understand. Honestly I would have trouble explaining it to someone who was a native speaker of English. Now I grew frustrated because someone asked me how my Fibro was doing which lead to the what is Fibro question. This made me question myself. It’s not that I don’t want people to know that I have fibro, its the aftermath of people knowing. I am not ashamed of my fibro. I will embrace and learn to love my body how it is. But its the oh, how is your fibro, is it better yet with medication, your all better right? questions I will get that I then have to re-explain that it is something you can’t cure. It’s something I have to live with. And I don’t want to have to deal with the people that say I am just in pain because I am over weight. I am over weight yes, do I make the best life choices all the time no, is exercise extremely painful, and make me tear up yes. So think about it would you want to be in extreme pain every time you move as well, because your brain and nervous system decides to be hypersensitive? 

[beautifullyashleyelizabeth]

Hi! I’m Ashley Elizabeth. I am a mummy to a beautiful Baby girl, a Slimming World target member and a home interior lover! I’m here to join a community of like minded people, where we can share our stories and likes and dislikes!

I will let you more into my life as I post, but here’s a little introduction 🥰

I am 32, I live in the North of England with my husband, our daughter and our two dogs, Jester & Mylo!

I suffer from fibromyaliga but I don’t let that hold me back! I have followed Slimming World for about 4 years and I even trained to be a consultant. I lost 4 stone,l to get to how I look today, and I will be posting lots of progress, before an after pictures. I have lots of tips and food ideas, which I’ll be posting, and I also have Instagram if you would like to see my daily food!

@sw_ashleyelizabeth

I just want everyone to feel positivity and love in their lives. I have in the past suffered with depression and it is a very lonely and scary place to be in your life, thankfully I have an amazing man that stood by me and was there to support me, but ultimately, I conquered it myself. I believe, if you’re not ready to help yourself, no one can help.

But I am here to show that life has so much to offer, we live in a beautiful world and if we fill our daily lives with love, positivity and laughter, we can spread that far and wide!

Therefore today’s positive offering is... if something bad happens, can you change it? If you can, change it, make it good, and if you can’t change it, let it go. Don’t let it eat you up, don’t let it upset you, consume you and rule you. Just think, I can’t change it, it’s happened, it’s time to move on.

So take a deep breathe, smile and have a wonderfully beautiful day xxx

I look forward to getting to know you all my loves xx

[siverfanweedo]

okay so gonna say thing but i really feel Pink Peal in this weird...really different way  so long story short i have Fibromyaliga which is partly due to a lot of the trauma and abusive i suffered when i was small ( note it wasn’t physical abuse of any sort )  BUT DUDE! when pink pearl was told her crack can’t be healed cuz it’s not something physical like technically speaking...she is healthy she is fine but the crack is there due to her trauma with Pink  I fucking felt that man and never in all my years have i felt that or will feel that again 

[spoonielivingfree]

Fibromyaliga

May 12th was fibromyalgia awareness day. May is also fibromyalgia awareness month so I thought I should write a lil something to raise awareness. Yes I have three chronic illnesses with the same awareness month.

Fibromyalgia is a widespread chronic pain condition which causes pain all over the body. This is generally nerve pain and is often sharp, electric shock like burning pain. I find mine…

[lelibug]

Fibro Bunny

Fibro Bunny | BLOG | Phoenix DragonQueen TODAY - One Of Those Days I feel like I Am Utterly TRAPPED & IMPRISONED by my body, subjected to Torture & Being Devoid Of All Personal Self & ZERO Energy... #Fibromyaliga #LongCovid #chronicillness #ChronicPain

TODAY… One Of Those Days I feel like I Am Utterly TRAPPED  & IMPRISONED by my body, subjected to Torture, whilst Being Devoid Of All Personal Self & ZERO Energy Inside To Even Sit Up On My Own… TODAY… One Of Those Days I feel like I Am Utterly TRAPPED  & IMPRISONED by my body, subjected to Torture, whilst Being Devoid Of All Personal Self & ZERO Enegry Inside To Even Sit Up On My Own… Doesn’t…

[aimeereese]

We waste a lot of time... www.aimeereese.com/single-post/2018/02/11/We-waste-a-lot-of-time