Poll How Much in Lost Wages Did Fibromyalgia and/or Chronic Fatigue Syndrome Cost You This Past Year?

[Merida]

I'm 56 and still working in aviation. But I can't continue for long like this as I can't do much physical work. Plus I'd never be employable at any replacement full time job. Maybe I can get relief from Prednisone and work a few more years. If not, then I'm retiring soon.

@cujet Just upright at my computer for a few minutes and saw your post. Any chance you have Lyme or co-infection ? I had a known tick bite in Virginia ( 2010, with rash) but was negative on the screening. My doc forgot about it. But a naturopath diagnosed me in 2017 - did full Western Blot with Lab Corp. But then PCR via my infectious disease was negative. Said I couldn't possibly have active Lyme. But now, info shows that PCR is negative after the first few months of infection.

Plus, my brother in Penna. just got diagnosed with Lyme. He has been in declining health for 20 years, but recently really bad shape. Severe fatigue. Now with a pic line and antibiotics.

So this whole area is fraught with incorrect lab results, unbelieving infectious disease docs, strange symptoms, disability, etc etc.

Also, check out Stop the Thyroid Madness. Some people need to push the TSH really really low before they see the benefits of thyroid meds.

Yes, I have not worked since this all started in 1998. Terrible. Mine started with injury, but I question reactivation of EBV, and now Lyme.

 

[cujet]

@cujet Just upright at my computer for a few minutes and saw your post. Any chance you have Lyme or co-infection ?

So this whole area is fraught with incorrect lab results, unbelieving infectious disease docs, strange symptoms, disability, etc etc.

Also, check out Stop the Thyroid Madness. Some people need to push the TSH really really low before they see the benefits of thyroid meds.

I have been tested for Lyme a number of times without positive results. I've also been put on long term Doxycycline 2x 100mg/d without results. I did have severe EBV years ago and still have EBV antibodies.

On nearly every test, I have low or low normal cortisol and low ACTH. Prednisone or Hydrocortisone do provide some relief.

Current TSH hovers about 0.2-0.4, as that's where I feel best. Plenty of long term changes to thyroid doses and med types without results. Although interestingly, T3 was a touch high and T4 was a touch low on my most recent labs. Never seen that before. Meds have been adjusted, without results.

Also of note, parathryroid levels are chronically 3x high, but blood calcium is low normal.

Interestingly, if I take 1500mg Calcium/day, my physical performance doubles. Calcium is no cure, but at times it helps muscle function. It's effects wear off after about a month.


Conclusion: 10mg Prednisone, B12, Calcium improve functionality into the acceptable range, let's call it 70% of normal.

 

[Apo Sci]

I am very lucky that my lo g term disability plan from work pays me 70% of my income and pension contributions and health benefits continue. However, the opportunity for promotion or to change emoyers was lost about 12 years ago. I used to be angry about that +the first few years) as I realized the lost opportunities, but eventually came to a place of gratitude for being able to remain in the workplace as long as I did, and for the disability income and benefits that I know so many of us don't have.

Yes, while I understand your frustation at having your career thwarted most people with disability were screwed by the insurance company propaganda into a mental health diagnosis settlement where their policies were limited to two years and then they were stuck receiving SSD and welfare which is only 20k/yr and a hassle because you have to recertify your income and expenses every year and have your housing options limited. I would LOVE to be in your place financially.

 

[Apo Sci]

As an anesthesiologist, I could expect to make at least $400,00 per year if I worked full time. I work very sporadically. I've been fortunate to have that and to have a job that pays a very high hourly wage, so we can get by on working a few weeks a year. For how much longer I can do this, I don't know, because I'm going downhill and can't control my hours when I work (can be up to a 12 hour day). But if you want to talk lost wages, I'm out at least $250,000 a year for 10 years.

Yes and you have to be careful to keep your activity within the energy envelope or you accelerate the ME and will decline physically. It's remarkable seeing physicians come down with the disease. I remember when half of them believed ME was psychological and taunted us for having Yuppie flu and saying that we just needed to get over it.

 

[GrammaLinda]

"The High (and Unmet) Cost of Fibromyalgia" blog indicated that the indirect costs of FM - due to lost productivity and wages, etc. - are much higher than the direct medical costs of the disease.

[fright]View attachment 615 [/fright]This poll asks how much in lost wages do you believe having FM or ME/CFS has cost you in the past year.

This is not an easy question to answer for those who have been ill for quite some time. I, for instance, came down with ME/CFS/FM over thirty years ago. I have to take a pretty wild guess. I project that if I'd followed my path then I'd probably working as a professional in a field and pulling in a good salary. My estimate of lost wages is very high! (It might not be high enough ...)

 

[GrammaLinda]

Yes, while I understand your frustation at having your career thwarted most people with disability were screwed by the insurance company propaganda into a mental health diagnosis settlement where their policies were limited to two years and then they were stuck receiving SSD and welfare which is only 20k/yr and a hassle because you have to recertify your income and expenses every year and have your housing options limited. I would LOVE to be in your place

Yes, while I understand your frustation at having your career thwarted most people with disability were screwed by the insurance company propaganda into a mental health diagnosis settlement where their policies were limited to two years and then they were stuck receiving SSD and welfare which is only 20k/yr and a hassle because you have to recertify your income and expenses every year and have your housing options limited. I would LOVE to be in your place financially.

I was forced into disability at 61 and early social security. I was doing well in my job. I had no dx other than extreme anxiety. Of course in 2008 I was told I had anxiety and pain because I was depressed. Although a local rheumy who worked with women and fibro had dx my CFS. I was still testing positive for EBV after 40 yrs. I had no 401 or savings having to use it to pay med bills before medicare eligibility. I had no other health ins. I won't go into details there. The loss of income and savings is incalculable for me. I do not know who makes 20K on social security. Not even close. However, I did not work my entire adult life, when I was raising my children. My husband at the time was self employed, not working steadily, and not paying all his taxes. Thank you God my circumstances have changed. I would be on welfare and housing otherwise. As we all know SSI does not receive sustainable cost of living increases - it is quite a joke, actually.

 

[GrammaLinda]

I was forced into disability at 61 and early social security. I was doing well in my job. I had no dx other than extreme anxiety. Of course in 2008 I was told I had anxiety and pain because I was depressed. Actually there would have been no benefits for ME/CFS/Fibro/Pots. Although a local rheumy who worked with women and fibro had dx my CFS. I was still testing positive for EBV after 40 yrs. I had no 401 or savings having to use it to pay med bills before medicare eligibility. I had no other health ins. I won't go into details there. The loss of income and savings is incalculable for me. I do not know who makes 20K on social security. Not even close. However, I did not work my entire adult life, when I was raising my children. My husband at the time was self employed, not working steadily, and not paying all his taxes. Thank you God my circumstances have changed. I would be on welfare and housing otherwise. As we all know SSI does not receive sustainable cost of living increases - it is quite a joke, actually.

 

[cujet]

I was forced into disability at 61 and early social security.

You made it farther than I will. I'm 57 and while I'm still working, it's taking me 12 hours a day, 6-7 days a week to accomplish what should be done in 20 hours. I don't know why I do it.