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JohnWBurns (@johnwburns)

Autoimmune Diseases and Fatigue

Autoimmune Diseases | Last Active: Nov 16, 2020 | Replies (474)

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@nanke99

I am new and just posted some of my story in someone else’s post. My fatigue and weakness has really destroyed the life that I had, and has
created much depression. I am barely active, my mind is constantly in a fog, and can’t foresee ever being able to pursue any of my passions or hobbies. I often cannot spend time with friends. I can’t imagine it ever getting better but only worse and I am 50 years old. I fee like my health is fading and going downhill rapidly. So there ya go! That’s how I feel… Kinda hopeless.

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Replies to "I am new and just posted some of my story in someone else's post. My fatigue..."

Hi and welcome.
Sorry to hear that. Been there.
Have you seen a rheumatologist or other specialist related to this?
What have you been diagnosed with, if anything?
What have you been tested for?
What medications are you on?

Sorry to sound intrusive but got to get some kind of baseline.

HI John, thanks. I am still unsure of my diagnosis(s), but Fibromyalgia is one. The other most likely seronegative arthritis. Anyone have that also? i started having crippling fatigue and weakness, only on occasion & for 2-3 days at time, accompanied with terrible chills no fever, about 2 years ago. Also, some numbness and tingling in arms, feet hand and a few weird rashes. I used to take off a few days of work every other month and just sleep and rest. It felt unlike anything else, and i became worried that I had some cancer or something. I have always been good about getting yearly physicals and seeing my doctor, but he never mentioned anything Rheum oriented and seemed annoyed with me- like I am a hypochondriac! Gradually the fatigue and weakness became worse, and in the last several months i have spent most of my days on the couch or in bed. Also I have developed terrible muscle pain and weakness. Simple tasks, like getting a cup of coffee, leave me feeling as though I had been lifting weights, and most times I can barely get up a flight of stairs.
In addition, I have been having terrible joint pains, that often wake me up at night, finger, wrist, elbows, shoulders & knees. Feet also.
In fact I only started seeing a Rheum last summer when my right knee was buckling and I was walking with a cane. What I thought would have been a torn meniscus, turned out to all part of this big mess! After trying a few meds that did not agree with me (plaquenil put me in the hospital with a dangerous rash), I have been on Cymbalta which has seemed to quell much of the muscle aches, tingling & numbness, and recently Sulfasalazine which also seems to be helping somewhat with joint pain. I still can’t do much though…. and if there’s a day I feel a LITTLE energetic and I try some basic activities, I end up paying for it needing to rest for the next 2 days.

oh and as for tests, I have had RH, ANA, all the typical lupus and RA tests etc which have been negative. I also had blood tests for multiple myeloma due to muscle weakness, also negative. My C-reactive protein and Sed rate have been elevated for over a year, also platelets. I had EMG for legs and MRIs of brain & neck, all normal. When I had my rash from Plaquenil and spent the night in the hospital a biopsy was done, in which the report said “unlikely drug rash” yet the doctors insist that it is and that biopsy reports are often wrong. Whatever. Maybe. On that note I was also told there was a polyp in my sinus so when I went to an ENT he basically said,
“oh I don’t really see anything. it’s fine they always say that!” Funny! I have not yet had my feet and hands x-rayed but would like to.
Due to my insurance, I have to go to clinics (Rheum, Neuro, etc.), and although there are “top doctors” there, i had been seen by an (idiot) resident with drive by reviews from the real doctors and they all said something different. I had to formally request a new, experienced doctor, which I now have, so hoping this will help. I think that’s it…

Sounds like the all too frequent tortured journey to a diagnosis.
Was the Fibromyalgia formerly diagnosed (trigger points etc) or was it taken as a default when other ideas were exhausted?
Whatever the case fibromyalgia wouldn’t explain knee pain and rashes which sounds more like Lupus, which I assume that you’ve been tested for.
The new doctor will need to drill down on the testing to check for less obvious causes, not all necessarily autoimmune, since something is causing the spike in CRP and ESR. Any illness prior to the onset of these problems, viral or bacterial? Any check for Lyme if you live in an area where it might be a factor?

thanks! yes it’s been a rough journey with little sympathy, which i don’t understand at all. i feel a lot of implicit bias, possibly due to ageism or maybe classism because it’s a clinic. anyway… yes i was tested for lyme- upon my own insistence. negative. thyroid is fine. and no other illnesses or viruses preceded. the fibromyalgia was the 1st thing my new regular/consistent doctor wanted to try treating- it seems a lot of this is trial & error: if ‘said’ medicine works, then that’s your diagnosis. although i agree it does not account for my knee/joint pain, it would for the fatigue and muscle aches. so that’s why we’re now also trying the sulfasalazine- for sero-negative arthritis. about 20-30% of people do not test positive for RF. i keep asking if there’s something we’re missing- think outside the box, but they have nothing to offer. doctors do tend to have tunnel vision. i have also had persistent right flank pain (kidney & liver) for over a year and have been seeing a gastro, had all obvious tests/scans for gallbladder and liver/kidneys etc. nothing. he doesn’t seem to think there’s any auto immune connection, but i am not entirely convinced. i also lost ALL of my teeth a few years ago- that’s a whole other horrible story and struggle. apparently “an inherited severe gum disease” but i’m not completely convinced of that either- when my extreme bone loss of teeth was first discovered years ago, that dentist then said it was highly unusual for my age (43)-only seen with systemic disease such as AIDS and diabetes, neither of which i have. dealing with multiple traumatic dental surgeries while working full time at a high stress job with a toxic (psychologically) environment, put me in a horrendous state of chronic stress, which i am certain has exacerbated (or created) any lurking autoimmune condition(s). i am also a 9/11 survivor and believe that my toxic exposure figures in here somewhere (as anecdotal evidence suggest), but try getting a doctor to believe that. they think you’re crazy or looking for some kind of pay out. there are specific WTC clinics but they are not yet funded to treat autoimmune.

Seems like all you’d need from the 9/11 clinic is a sophisticated toxicology screen, not an autoimmune diagnosis. Toxic effects are a realm unto themselves. You should probably check that in parallel.

yes, that has been in discussion, but there’s no protocol for that now, and no budget for doing sophisticated testing like that, especially on thousands of people and nothing i could afford for me personally. there has been discussion about testing teeth- and i saved 2 of mine just for such an event- but that is a long time away (bureaucracy), if at all. but that is on my radar as well as other people’s. i have relationships with some that work directly with the congressional group overseeing zadroga bill and the inclusion of new conditions. inflammation/autoimmune is definitely on a list of conditions to be included but there is much republican (sorry if that includes you or anyone else reading!) stonewalling of funding approval and it is also simply a long process.

I so agree that it seems like you have to suffer a long time and go through several doctors and rounds of testing before you find a diagnosis. I was finally diagnosed with RA, fibromyalgia and Sojourn’s syndrome after five years! I even went to special diagnostic hospitals. I have had these conditions for 10 years now – actually 15 since it took five to get any one who knew what was going on with me (all started around age 40). I am doing better. I have good and bad days, but more good. It took a long time to come to grips that I would never be as active or feel as healthy as I used to. I pray you find answers and relief soon. Don’t give up! It does get better. Maybe not great, but better.

I have PBC an auto immune and an undected stone in pancreas pushed in during a EUS test they recently seen residue was in horrible pain Drs and husbsand and family thought I made this up in my head look ok you must be? How fustrating now I am skin and bones they belive me ? I totally understand I went from doing every thing to not being able to take care of my home I I belive I have malabsoportion Good luck and prayers to you !!!

I know how you feel been ill since 2009 I am 53 now? I notice when Im in good company I forget about my health issues! Find some good company it helps bless u Deena

There is a book about a female explorer, Isabella Duncan, (I think). She was sick every time she was in England.
But if she went to Mongolia (first white female to travel there alone) or the Rockies (first woman to scale Longs Peak)
Or if she was in Hawaii (she loved it) – she was well, hail, and hardy.
If she was with her primary family, she would lapse into pain and indolence.
Shake it up! Seek a Shaman…find another path.
I’m one to talk.. I am bonded with golden chains to the tech industry, which is slowly killing me, for another few years.
But in my dreams, I dream another life!
Sometimes they are so vivid, I wake up confused as to where I need to go and what I need to do.
R

Please know it is not hopeless! It is hard, but try moving for 10-20 minutes a day, even just walking at the mall or in your neighorhood. Daily small amounts of activity can actually be energizing. I have to force myself sometimes but it really is worth it. Is there a gentle yoga or tai chi class you can join nearby? Even if you miss classes sometimes just having that on your schedule can be encouraging and you may meet people with similar concerns who have some understanding of what you’re going through. If your doctor is not addressing this or taking seriously maybe it’s time to find one who will. Give yourself permission to rest when you need it. That helped me a lot because I was stressing myself out thinking I was letting people down and I just had to say hey, I need this rest. I started keeping a gratitude journal that I write at least 3 things I’m grateful for every day and then when I’m really down I can look at it and things seem better. We are all so individual and have to just try things to see what works for each of us. So pick something to try and keep a log of whether it helps or not. That way you can take back control of some part of your life and see that you are trying to move forward. My mantra is “This is only temporary”. Where you are now is not where you will always be. Sending good thoughts and prayers your way!