Poll Have Your ME/CFS and/or FM symptoms gotten better or worse since you first became ill?

[Ughhh]

I initially got sick in 1999 and had attacks for about a year with worsening symptoms. I spent several years seeking treatment and diagnosis, eventually was treated with mepron and zithromax for a borderline babesiosis test. After that I had almost complete resolution of symptoms other than vulvodynia. Until I moved to high altitude Denver in 2008 and then I began having new symptoms I didn't know if even related to illness in 1999, developed a long list of symptoms including atypical face pain. At this point my symptoms are worst they have been, I feel unwell on daily basis, the fatigue has dramatically worsened in last year and pain is out of control, massive temperature regulation issues. I had positive fibromyalgia blood test. I'm beginning to suspect lupus. I'm a mess. The symptoms aren't growing now, just maintaining at this abysmally high level.

 

[Suzie B]

My ME/cfs, MCAS, started after my body’s bad reaction to chemotherapy, immunotherapy and radiation for Stage 4 lymphoma in 2019. Originally my oncologist thought it was the normal dysautonomia after treatments but I got worse not better. After a terrible two years of trying to find help, I was finally diagnosed late last year. I try hard to pace, but it’s such an unpredictable disease and it’s combined with the stage 4 lymphoma I am mostly bedridden. I also have chronic pain from a tumour that was wrapped around my thoracic spine which damaged the nerves and spinal cord. Gabapentin and Methadone keep the pain manageable, but nothing deals with the exhaustion and weird symptoms! My newest problem is swollen and painful hands and feet, particularly when resting. It’s not joints, it’s along the sides of my fingers and toes. My osteopath thinks it’s problems with my nerves and blood vessels. I wondered if anyone else has had this issue as my ME specialist says he’s not seen it before and doesn’t seem interested in helping. I thought I might try some compression gloves to see if they work. Thanks for these forums Cort.

 

[Hari]

Hi Guys,

I did not participate actively in the blog for only one reason - I choose to focus on my recovery and career. Today I saw the survey email. I felt that I must share my progress.

These days I am doing good. But I have to maintain a particular lifestyle. Since Jan 2022 I have a full time job as Vice President in a software company. Now, after 16 months, I am looking to take up additional roles and responsibilities. I am serving my client with offices in Dubai and in Africa. In parallel I am working out a couple of large business deals. I am happy, becoming stronger day by day.

I want to give you a glimpse of what I did to recover:

1. Every third day complete fast (only water). Once in a month or two to four days of water only fasting. Some times dry fasting too.
2. Every day 2 to 4 litters of fresh fruit juice. Mostly watermelon. Plus lots of bananas and other fruits
3. Completely stopped rice and wheat. Only millet based diet
4. Mostly veg (barely eat meat or eggs)
5. Noni juice, aloe vera gel, combined with all plant protein and natural dietary supplements
6. Cover myself with thermal wear even during summer (strange, but that is helping me not to have body pains)
7. Stopped yoga or any kind of physical activity (due to PEM)
8. One scientist in India is giving me a specialized plant based extract (based on nutrigenomics science). This is helping me to progress (or recuperate) faster
9. Most importantly, Yoganidra (whole night meditation)

I still have bad days and good days. The good days are more with refreshed and vitalized self, highly productive. Bad days and duration of suffering is very minimal, and incapacitate me for max of two hours. Good rest is sufficient to be able to function normal and better. I also travel a lot these days.

My recovery journey is more than a decade, and continuing. Based on my journey I believe that I may achieve sound health by 2025, possibly athletic built and performance.

I was advised not to write Have fun tag as it is extremely difficult to have fun while having pain. That is another reason I stopped participating. One of my secrets for my progress is having fun, cracking jokes. Now through out my day I laugh a lot along with my international colleagues in Dubai and Africa.

Happy to have the inputs from this blog during my active participation few years ago. Thanks to all.

Start to have as much fun as we can, and progress.


Have fun and start to become healthy,



Hari

 

[Shannon]

My symptoms have gotten worse. Especially pain and fatigue.

I was diagnosed with Fibromyalgia in 2011. In the fall of 2010 I experienced chest pains while at work and went to a walk-in clinic where I was diagnosed with costochondritis. It has never gone away, and to this day still troubles me quite a bit. I had been taking over the counter tylenol 1 with codeine for many years to help me get to sleep. I have had body pain as an adult for as long as I remember but it only troubled my being able to sleep. I thought it was just wear and tear from playing many different sports and a few injuries from that.

Over the years I have had my pain medication increased and changed until now at 9 mg of hydromorphone 2x a day with 2 mg break through pain pills (as the 9mg never lasts a full 12 hours). I am on Cymbalta and Lyrica specifically for Fibromyalgia and a whole other cocktail of medication that is currently managing my pain fairly well. Of course there are pain flare ups mostly due to stress and the weather.

I wear industrial strength ear plugs to tone down background noise. Noise is the worst hypersensitivity for me. Not being able to stop a repetitive sound is the worst trigger for me. I need a calm, quiet environment. Always.

I still spend far more time abed and asleep than I like as fatigue is the second worst symptom than pain. I am 53 years young gal who still thinks I'm in my late 20s. I often joke that my mind says, "Let's go!!" while my body says, "Oh hell no!!" You are only as old as you think you are and I refuse to let fibro beat me.

I am on disability, but only since 2016. Fortunately, it is just enough for me to live by myself (no roommates) yet be able to mostly afford the outrageous prices of groceries these days in Canada. I quickly lost my career, my lifestyle, and my freedom because of fibromyalgia and severe chronic pain. All I can do now is survive it by taking things hour by hour and checking in with myself on how much pain I think it is "fair" to experience and how much medication I need to be "comfortable" when that pain is 24/7 and only masked by the hydromorphone.

I am very grateful for this site and Cort's dedication to finding and including what is happening in the world in regards to trials, treatments, potential new medications and news about fibromyalgia. I have hope that if not a cure at least there may be better treatments and/or medication than just throwing pain pills at me within my lifetime.

I also wish the Canadian government would appreciate people like me living trapped in their own bodies, in their own homes with just the internet (albeit with some of the highest prices for internet and cell phones in the world) for a social outlet and any connection to the outside world. That I might be able to have access to alternative treatments like chiropractic, massage therapy, hydro therapy, acupuncture, and even naturopathic medicine which is all at my cost and entirely out of reach. I fully believe that if these were made available to me my quality of life would improve immensely. Unfortunately, without private personal insurance and the ability to pay for it, my life plods on as it is. No pity party here. As I often say, I'm explainin' not complainin'.

Hang in there everyone, you are not alone. Sending light, love, and laughter your way.