Fibromyalgia - A Patient's Perspective | Advanced Rheumatology Open House 2022
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- čas přidán 21. 08. 2022
- An Advanced Rheumatology patient shares their experiences with Fibromyalgia symptoms and treatment.
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Fibromyalgia entered my life in 1997, after having an Anaphylactic shock reaction to a drug. I thought at first I was developing Multiple Sclerosis , as the muscles in my legs, arms, and back felt as though I was suffering from severe sunburn, with stiffness in my limbs making my movements slow. Thank goodness I had a good family doctor who thought the trauma I had been through had brought on Fibromyalgia. In my early forties I had been diagnosed with osteoarthritis, which runs in my family, as does Rheumatoid Arthritis, but this was very different. My doctor sent me to a Rheumatologist, who told me he didn’t really know what Fibromyalgia was, but after examining my body, agreed I was having some problems. Later that year I was sent to a doctor who treated exclusively people with Rheumatoid Arthritis. After extensive testing by him, it was discovered that I didn’t have R.A., and like the other doctor, said I had a problem , but he didn’t know what it was. I ended up going to a Homeopath, who gave me some supplements, steered me towards other treatments, like reflexology, water aquatics, light body massage, and walking. These things helped me to keep going, and having a positive attitude about my future was also encouraged. This discomfort has never totally disappeared, but when I was younger I was able to cope with it better, and enjoy my life.
I just had my 80 th. Birthday, and unfortunately I am once again in the throes of pain. November 2022, I was foolish enough to take the BiValent vaccine. I had taken the Pfizer covid vaccine the previous year, but only took one of the boosters, with no side effects. Mid August last year I took Covid, which did not clear my system for ten days, but I only felt a bit under the weather for 3 of those days. When the BiValent booster came out the health department announced that we needed to wait 6 months after having Covid before taking the latest shot of the vaccine. Just a few months later, they announced that just 3 months after having Covid, we could take the shot. I had that shot mid November at 10.00 a.m., and at around 2 p.m. that afternoon, I felt as though someone had opened my head and poured acid into my body. The severe aching and burning sensation was worse than I had ever experienced before, and I realized my decision to take that latest vaccine had not been a good one. Seven months later, I am still in agony, and I can feel the chronic inflammation which I cannot get ease from. My bowels and digestive system are also out of kilter, and I now suffer from debilitating acid reflux, which hasn’t much improved with medication. I thought our Drug and food administration would not allow untested drugs onto the market, but now I hear they did. This BiValent shot was not tested but approved without going through our usual stringent testing. I am a Canadian, who has lost faith in everything to do with our health department. 36 Billion dollars were made in one year by Pfizer alone, and no doubt a lot of people attached to our health system reaped in part of that profit. Welcome to the 21 st.Century, where corruption and greed are rewarded, while common sense, decency, and love for our fellow man are trampled on.
I really believe my fibromyalgia was brought on by leading a very stressful life living with a verbally abusive partner for many years. I was always walking on eggshells. Over a few years I became sicker and sicker with very many symptoms. My doctor didn’t believe me and sent me to a psychiatrist who said I was obsessed with my health. Of course I was. I had been a very healthy women and now I was in pain from head to toe, couldn’t stand bright lights, loud noises, smells, and had chronic fatigue. Finally, after 10 years I found a doctor who diagnosed me with Fibro after seeing me for five minutes. I have been surviving/struggling with this for over 25 years. It is a living hell. Thank you for this great video. Any information we can get about this disease is really appreciated. Take care everyone. Hugs to all❤️🇨🇦
Same mine developed after after narcissistic abuse, stalking and harassment from same person
🤗🤗🤗
Only another Fibromyalgia suffer can understand what we go through and our symptoms getting worse every year with no cure in sight. My kids don't want to hear about any of it. They just think I like to complain. Little do they know I only complain when I'm having a horrible flair up. I wish I could just find some arms to gently hug me and sympathize with me. Yeah I want sympathy, is that a bad thing?.
@@debbiealanouf8125 yes,my family don’t want to hear about it either. I always try to lead as normal a life as is possible and try not to complain. Too much, but there are days that I just allow myself to have a “pity me” day and feel really sorry for myself. We can’t be strong every day. It is just such a difficult illness to cope with each and every day. Even trying to fit Christmas into our Fibromyalgia lives is a nightmare. I used to love Christmas, it now it is a huge challenge to take care of. My husband passed away a few years ago, so it is even more difficult not having someone to help me. I am sending you a huge, gentle hug. Reply to me any time you need an ear. Merry Christmas and Happy New Year. ❤️🇨🇦❤️🇨🇦
I believe your 100% right, stress makes me worse. I’ve just been diagnosed after 10 years. Bright lights, teeth grinding insomnia, pain insomnia, It’s a horrible debilitating disease. I feel so sorry for anyone with this disease, especially young people.🙏
This has been the most informative video I’ve seen about Fibromyalgia.
Thank you 🙏
I have severe fibromyalgia that had disabled me. I push myself a lot but I am not wining here. I am really tired. I will continue anyway.
I was diagnosed with post-traumatic fibromyalgia in 1997. Since then I saw a rheumatologist who put me in Elavil which worked for a short period of time. I think I was also on Amitriptyline as well which worked for a short period and the doctor would up the dose, but it did not help that much. I then stated seeing a Neurologist who did a sleep study which was done in the hospital where they studied my brain activity and it showed constant movement in my legs and lack of deep sleep or delta sleep. He put me on Gabapentin which was a miracle drug for me. I was also so full of anxiety that I would be in the inbetween stage of wake and sleep which caused what he said was head explosion syndrome What it did was it jolted me awake with the feeling of a shock wave going through my head. He prescribed the lowest dose (50mg0 of Trazodone and then I was asleep within 20 minutes and no more of the head explosion syndrome. I was able to function well for years with these two medications. I too became a walker, starting out slowly minutes and then worked up to 20 minutes and this was using my treadmill. After that I begm walking outdoor and was able to fast walk for 30-60 minutes at a time and sometimes twice a day. I felt so good, even though i was a single mom wit two teenagers by then and full time work as Legal Assistant I did have other traumas off and on though the years which set me back. The latest two traumas were both in 1921. I fell and broke my ankle and gibial both on both sides and I was screaming and my adrenalin was pumping away. I was laid up for about 9 months to a year with that injury and then just when I was almost back to "normal" I fractured two vertebrae in my mid-back. I had a surgial procedure to repair the fractures and so the bones could mend. I was put under general anesthesia while they inserted two long needles into the spine location and put two tiny balloons into open up the fractures and then put in a cement-like substance and removed the balloons. I came home feeling so much better, I was walking straight whereas before I was hunched over and i would have only gotten worse without the procedure. However, now I'm limited to what I can do. I developed severe nerve pain in my back and eventually neuropathy which has caused me to need a cane or walker to get around as i have a lot of imbalance. i am semi- a shut-in now, I have to do all of my banking, and shopping online. i can drive short distances but I can't carry anything heavy like groceries for example. When the weather is in the upper 70s I can get outside and do a little gardening and wer my plant and small yard area. I have also developed excruciating pain in my legs and very low part of my back during sleep time, when I wake up in the night or i the morning it's very bad and I spend a lot of time resting now with a heating pad. i honestly believe that the procedure and the trum of the two injuries have made my fibromyalgia so much worse than it has been for a long time. My Neurologist passed away and now i see my PCP who teats many women with fibromyalgia. i will be seeing her soon and have a lot of questions and need referrals but getting around is the stickler. So that's my experience with Fibromyalgia.
Thank to my Dr. Crowley, Lauren at VM hospital. she's ( God Bless Dr. For me) understand my painful feelings.
Weather Changes kills me.
Thank You So Much! I have it too, and love hearing others experience
Thank you .... finally someone who understands thee conditions.
How many fibromyalgia patients have this genetic mutation? I suspect I have additional physical reasons for my fibromyalgia including gene mutations. One gene mutation I have heard is common among fibromyalgia patients is one that causes periodic paralysis. I am sure there are other genetic mutations that cause symptoms in addition to fibromyalgia. I hope doctors are willing to keep testing their fibro patients even after a diagnosis.
Stopped all meds, why ?. Because whilst on them it was a constant message of un wellness to my brain , which is understood by the brain as danger meaning more stress / more symptoms. .since stopping these mind and body altering drugs and engaging in a happier, positive and healthier active lifestyle I am 80% better, soooo many symptoms have subsided both physical, mental and emotional.
Yes we did have a worry that the medical doctors have missed something. And we are sick and that terrible feeling it is more then fibro. Just a yuck feeling and flu like
Immune system
Mine hit hard when my husband passed away unexpectedly on our 19th anniversary.
My husband died 31 years ago and I'm still grieving.
I am sorry for this my condolences.
Yes mine got worse after my husband died, agreed.
True 👍 👍
The dr she explained me so clearly 😢
Amazing information, thank you so much!❤️
Even wash rags hurt my skin.
Where is Dr. Stupi's office?
❤❤❤❤
I developed FM after being diagnosed with heart problems and was prescribed steroids
My Sleeps awful.
culprit: microwaves,can last a few years
Can I please have a contact number, address, email for Dr. Stupi