I have been living with FM and CF, for over 30 years. It’s an exhausting illness, that many doctors, even now, think it’s a lot of bologna. I feel that my nervous system just totally crashed one day. Suddenly, I could not keep my balance, stand up very long, couldn’t tolerate touch, sound and light produced migraine-like headaches and the pain was incredible. My blood pressure went sky-high. I had plenty of other symptoms. With my husband beside me, we went to Mayo Clinic in Minnesota (twice), various doctors in our area, and also to California. Along the way, I tried an incredible number of medications - some helped a bit, not at all, or made the situation worse. When I was “black-balled” by the area doctors because I had tried an unorthodox treatment regimen, I struggled to find someone to help me. Finally, my husband had me call a business acquaintance. She gave me the name of a psychiatrist: things were getting better. I did an extensive amount of research and read volumes of material on the topic. I spent a majority of my time sleeping, even in our business office. Although there is more to the story, suffice it to say that after feeling reasonably well for about 10 years; I slipped into a dark space in the last two. I haven’t quit trying because of the love and affection my dog gives me. My cats also keep me going. I pray that any research quickly finds a course of action.
Hello, I have a mum with MS a son with ME/CFS a daughter with Cronh’s and I have Fibromyalgia and Vasculitis - we ALL feel your discomfort with the people who think that it’s boloney because they see us looking kind of ok at times. When it’s invisible and at times we can carry on quite well, making an extra effort to appear well it helps, well I find it does.
I did learn that with the CFS/ME there is now a blood test that is in its early stages, and I was also told if you have CFS/MS you will have had Barr Epstein Virus or Glandular Fever. Unfortunately, these are the same key illness markers if you have MS (which is worse and only 100% detectible via a lumbar puncture)
I radically changed my diet to help my symptoms, and although not much fun to begin with once you feel considerably better you don’t want - at least I don’t - the food so much. I gave up sugar - completely - even if it is listed as an ingredient I don’t eat it. none whatsoever. Also All simple carbohydrates - wheat, rice, pasta, potatoes, etc. such things turn to sugar in the body quickly. Occasional brown rice, wheat free bread, sweet potatoes and other than that fruit and vegetables and very occasionally fish, eggs and cheese - helped heaps - I had almost normal levels of energy so then could exercise as I had been told that helps too - it does - cycling (and swimming when possible) has helped no end, losing a few KGs along the way wasn’t unwelcome either…
not meaning to be preachy, just sharing - but I know stress is another problem for the immune system and that is unavoidable - unless you become a hermit - so If it’s that, my suggestions might go some way to help you. Good luck
Thanks, Wendita38. I should have specified that the non-believers are medical professionals. Yes, FMS/CF have been around a while, but many of them refer to this syndrome as garbage can diseases. Much like mental illness, you can’t see it, so it isn’t real.
You sound like you are gluten-free. I have a sister that after 55 years of severe illness and close to death, finally got the right diagnosis. She is gluten intolerant. Interesting, side-bar: she has been a nurse for 50 years.
Diet probably helps. I am not mentally there yet, but appreciate your kindness.
NODj,
I am aware of the blood test.It’s about time. I am also aware that I should work on my diet. I have been so uncomfortable in the last 2 months that I really haven’t cared. All I want is quick and easy. I simply do not have the energy to do more, now. My stress was off the charts for at least the past 8 months, because I was trying to work in a drugstore, on my feet, for 8 hours a day: 30 to 34 hours a week. I finally quit after a series of events showed me that continuing was foolish.
Thank you for your advice. It’s good to know someone cares.
Mcd30,
I have a similar story with fibro as you have had. I recently learned of a new program at the Cleveland Clinic in the Center for Functional Medicine. Their approach is to look at the problem holistically so they are treating your body, mind and spirit. During my first appointment, I met with a DO, a nutritionist and a health coach. They gave me a program to follow including supplements to help with the pain, heal my gut and help with sleep. I am 3 weeks into the program and feeling relief from the supplements. I also have to do the elimination diet for a few weeks to determine what causes my inflammation to flare up. And I’m reading a book about how to transform stress so I’m not letting my mind go to negative responses every time. It’s a very thorough approach to healing yourself. And also they recommend meeting with a therapist. I’ve had that in place for years now as I raised my now adult daughter who is bipolar.
My hope is that all of this work will help me turn around the fibro so I can be off meds. As we age, there is pain that will be greatly amplified if the fibro is still hitting me. I really want to avoid. At 56, I’m not sure I will but I’m going to try.
For more info about the center, go to www.clevelandclinic.org. From there you can search for the Center for Functional Medicine.
Good luck to you!
I have subscribed to a Fibro newsletter from UK. It is published by a fibro organization over there. Their newsletter has existed for at least 15 years. I discovered them during my never ending web searches for any info that I can use in my battle agains fibro. They publish a lot about research such as a recent study proved that many people with fibro have brain and central nervous system inflammation and it was improved in 60% of those treated with a current drug. That is just the tip of the iceberg regarding all the info they put out. I have not had a doctor recently that is receptive to research info etc so I have not been able to try many of the treatments I have learned about. Just since last year they have posted treatments that are helping people with fibro. Hyperbaric chamber sessions are common for fibro patients in UK and they help reduce brain inflammation. That results in pain control… The link is https://ukfibromyalgia.com/magazine.php
It is well worth the cost of a digital subscription in my opinion. I would love to obtain the back issues but they are very expensive and they offer no discount even with ordering a large number of back issues. Good luck, we all need it.
Mcd30, your words, " I could not keep my balance, stand up very long, couldn’t tolerate touch, sound and light produced migraine-like headaches and the pain was incredible. My blood pressure went sky-high.", are pretty much word for word with mine to my doctors and in my application for SSD. Yet, they seem to make you feel as if it’s all in your head or it can’t be as bad as it seems. My doctor said to me, “What do you want me to do about your Fibromyalgia?” And when I started having these uncontrollable shaking in my arms, she said, “Try to control them.” And another doctor once told me, concering my clinical depresson, “Why don’t you stop taking your anti-depression medication? It’s not like it’s helping and it’s not like you’re going to go jump off a building?” Little did he know, I had one found myself in that exact situation. I have 5 children, yet it’s my little old Shi-Tzu “Oscar” that keeps me going. I’ve tried on more than one occasion to get someone to take him because I would rather not live like this. My final disability hearing is at the end of the month and I fear being turned down again. I say this because I want you to know that I truly understand your battle. God bless.
Remember that I said all this a long time ago. The attitudes in the medical community keep changing. On point, I was using pain meds quite a bit, but that was more than 10 years ago. Now, I cannot get tylenol with codeine, even after back surgery last year. They decided to limit this medication, even though I was still having pain. The opioid “crisis” has them all running scared. I am experimenting with amitryptaline and Xanax. I am feeling better. Thanks for your comment.