Autoimmune Diseases and Fatigue

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.

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.

I suffer from Anemia and Interstitial Cystitis. I take 4 Ferex Forte 150mg per day for the Anemia; the highest # I've reached is 11. My body simply doesn't absorb iron. My first cousin has Lupus. Between the Anemia and the Interstitial Cystitis, I am exhausted. Additionally, I've had 4 bouts of pneumonia requiring hospitalization within the last two years, so I know my immune system is shot. I'm on 2 antidepressants, 1 anti-anxiety, B-Vitamin with Methylfolate, Probiotic, Magnesium, and three for the Interstitial Cystitis: Elmiron, Uribel, and Oxybutin. However, I am one of the lucky ones: Elmiron doesn't work well for many suffering from IC, but it works wonderfully for me.
Additionally, I have a large cyst in my right kidney, 2 smaller ones in my left kidney, and for the second year in a row, 2 kidney stones. I'm now on Bactrim; hopefully these stones are small enough that they will pass on their own. Last year I was hospitalized for the extraction.
I am going to attempt to go back to swimming laps. That is a great stress reducer for me, and although it leaves me exhausted, I'm hoping that the additional exercise will help my body overcome these challenges. So glad to have found you!

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.

I am iron-heavy in my blood. Totally not anemic. However, since I had my son when I was 34, and got into a relatively low impact wreck. I cannot sleep, I ache all over, and my energy level is basically in the toilet. Swimming is the Best exercise! There is no way out of this thing - only through it.
RR

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.