For months and months now, I've not been well at all. I'd been losing ground at physical therapy--which had been keeping my Migraines at bay--and I could not shake this crushing fatigue. Then the deep bone pain and muscle pain started, and then lower back pain, too. And all along--for months and months--I'd been feeling so unlike myself. Confused at times, indecisive at others, still other times, I'd search for a word in the middle of a sentence while talking. (So embarrassing.) I felt like I was in a fog all the time. Writing became such a chore; reading, an impossibility. I'd also seen my eye doctor back in December for severe dry eye and gotten on a prescription for that, with his suggestion that I get a doctor to test me for Sjogren's Syndrome once he heard the rest of my complaints.
That's where and how my Odyssey began.
I won't bore you with all of the details. My quest took me from the eye doctor to dear Dr. B., my neurologist, who ordered some labs to test for Sjogren's and a few other things. From there, I went on to a waiting list at a rheumatologist. All the while, I was losing more strength and stamina. Pain kept me from being able to sleep and carry on with my normal life. My weekly grocery store trips became my last vestige of normalcy, and they cost me dearly in terms of their aftermath of pain and exhaustion. Many times, I sat in the parking lot, waiting until I could bring myself to drive home, leaving heavy items in the car for Rick to bring in. Putting things away took forever as I rested often.
The rheumatologist's initial diagnosis was palindromic rheumatoid arthritis and possible Sjogren's, and a couple more labs were done. No results were conclusive. I had a brief respite after a steroid blast, but another try a month later when the pain roared back gave me no relief. In desperation and in debilitating pain, I contacted a friend who is a sonographer for the Cleveland Clinic. She pulled some strings and got me in to a top rheumatologist there.
In a two-hour consultation, this doctor took an extensive history and then narrative of my condition: its origin, development, symptoms, and affected areas. Then she examined me and asked me about my lifestyle, diet, and habits. Then she ordered twenty-two lab tests. And she identified at that moment what she thought it could be, something simple and, most importantly, reversible, although it would take some time.
The labs confirmed a couple things I already knew: one, that I have a lousy immune system; two, that I do not have TB or any thyroid issues. But the labs also confirmed what this doctor suspected from my symptoms and examination: my problem is not rheumatoid arthritis--those factors came back negative. So did Sjogren's. My problem is a severe and prolonged Vitamin D deficiency.
It's astonishing to me that something that seems so small and so banal-sounding can wreak such havoc. I was being tested for heavy metal poisoning, aluminum poisoning, arsenic, Lyme disease, even Parvo! They were testing my blood for markers indicating lupus, MS, rheumatoid arthritis, and other frightening things. But they all have some of the selfsame symptoms in common, and let me assure you, these symptoms are frightening to endure. I am beyond grateful not to have those illnesses, and I look forward to the end of my misery, whilst sufferers of some of the aforementioned illnesses must only manage theirs.
My deficiency is such that it will take months to recover my health. I am currently megadosing twice a week (50,000 IUs) for two months, at which time I will be retested. The doctor is confident that I will recover completely from this, but has told me that I will need to supplement Vitamin D3 for the rest of my life.
I can do that.
In the meantime I have to work very hard at Being Patient. That, as many of you know, is not my gift. I want My Life back. I want Me back. I want my brain back. I am tired of being tired. I am tired of not being able to Do Anything, especially the Things I Love. And I am so very, very tired of Pain. My heart breaks for those who must live with it as a Constant Presence Lifelong.
I hope I find someone here when I can finally return. And I hope I am finally Me when I do.
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My goodness! What a story-- and what a conclusion. I'm sorry that you've been going through all of this, but will admit to being relieved that your problem is something so simple to remedy. Never heard of this before, but know that with a little patience [ok, a lot of patience] you'll be fine.
ReplyDeleteAlly Bean--Thank you. I had never before heard of such a thing either. I look forward so hopefully to Being Just Fine.
DeleteMy doctor has had me on 2,000 iu of D3 daily for the past two years and I will be on that dosage for the rest of my life. It was one of the first thing I was tested for when I was having similar problems with severe fatigue. I'm really glad they finally got a diagnosis and a path to a "cure" that will be so easy to manage.
ReplyDeleteJean R.--That dosage will also be my eventual maintenance dose, once my own levels reach normalcy. I had been taking 1000 iu daily, but my deficiency had been so prolonged and so severe that it was inadequate. I take it that you are feeling well now, and I'm so glad for you.
DeleteI can identify with your frustration and feelings of helplessness in this situation. I was diagnosed with lupus twenty-five years ago but that was after five years of "mystery" symptoms. I'm glad that medical testing has improved over the past years. Take care of yourself and have patience; take pride in small victories.
ReplyDeleteLiza Kirschner--Hello, and welcome to the Dept. I have a long-distance friend who is living with lupus, so I know its challenges second-hand only. When it was a possibility, I did some research, and I found several blogs wherein their writers faced years of uncertainty before getting their diagnoses.
DeleteFrustration and helplessness, yes. And those stresses trigger pain and flare-ups in lots of conditions. How do so many people manage? I feel for them. And add the mess of health care...so many, many challenges.
Thank you for your concern and encouragement. It means a great deal to me. You take good care as well.
So sorry about your rather frightening symptoms but glad you have a diagnosis and treatment options. Sending rays of sunshine and warm thoughts from NC to Ohio.
ReplyDeleteNCmountainwoman--Thank you for coming down from the mountain and up to NEO to share your encouragement and warmth. I know you have plenty going on down there yourself. Hope to see you back at your site soon.
DeleteHow horrific, but again how fantastic that it is a reversible condition and that this amazing doctor has the ability to think a bit outside the box for this diagnosis. It will take time, but you will get a little stronger everyday and that is what is important. Having a plan in place is so important. I wish you the very best. As for the migraines, I have them but I also treat people with them. I wish you lived closer. Look for a therapist in your area who is proficient in Cranial Sacral Therapy, it will help.
ReplyDeleteMereknits--I know you are taking your own time away at present, so seeing you here is a kindness. Thank you. My migraines have been a welcome absence since having PT for cervical myofasciitis, and although I have had to stop sessions for the moment, the headaches are still at bay. I will talk to my physical therapist about CST, however, when I return. Again, thank you for your encouragement and concern. It means a great deal to me.
DeleteI will be here when you post ... and I am so glad you ave some answers and some hope. And, yes, I understand. Imwant my life back too. It is going to take one hell of a lot of work.
ReplyDeleteMaryG--And I will be so glad to see you when I get back.
DeleteI'm sad to hear that your life is not quite yours, either. Please email me at the link in my sidebar if you want to talk more about it.
I'm so sorry you were suffering through all of that! Chiming in with everyone else in relief that it is reversible and that you were finally given a diagnosis.
ReplyDeleteWhen you do not have your health, you really have nothing. I am glad you are going to get yours back, and wish you all the best in the process.
Hugs to you!
Gina--Thank you for your best wishes and the hugs. You are so right about the importance of one's health. Spring is finally here in NEO, and while I can enjoy the beauty of the flowering trees and greening of the landscape, I can't really dig into things as I normally would. And taking my daily two mile walks is an impossibility. Even around the block is a question mark most days.
DeleteI look forward to summer and looking forward.
I'm so sorry you've had to go through all of this, but very relieved that it's treatable & that you should recover. I wonder if this condition is one of the reasons you've had trouble reading books - I mean, has it been progressing for that many years? Scary! And yet, a win for modern medicine for a change.
ReplyDeleteBug--Thank you for your kind concern.
DeleteI wonder the very same thing. Lots of things that I blamed on The Menopause could have been the slow and steady decline of Vitamin D.
This is, indeed, a big win for at least this wonderful doctor. She was as tenacious as a rat terrier. She was ready to test me for Zika and a Caribbean-based disease had my travel warranted it. When I assured her I had been nowhere more exotic than MD, VA, KY, and Canada, she reluctantly took those off the list.
ive heard about vitamin D deficiency a lot lately and apparently it's because we stop absorbing it once we are a certain age? Wishing you a speedy recovery to your health as well as the patience you'll need while you wait.
ReplyDeleteRose--Thank you--I will accept both those wishes since I need them equally.
DeleteYes, our absorption is a factor, along with the fact that I live in NEO--Home Of Incessant Cloudiness--and the fact that it is difficult to get adequate D in diet alone. I also have an inherited factor.
Another concern for the population at large is the burgeoning use of sunscreen. I don't often use it, but my skin is not fair, either. But its use inhibits the absorption of natural Vitamin D from the sun.
It's all new to me. A crash course, to be sure.
Wow, wow, wow - I had no idea you were having these problems. So very sorry. But, like everyone else, so happy that it is so easy(though time consuming) to treat. A friend suggested a number of years ago that we take Vitamin D as the "Happy vitamin" especially during winters, etc., so I've been doing that for several years now. I had never heard of our ability to absorb it from the sun diminishing with age...interesting. And, I don't go in the sun at all these days (thanks to a number of basil cell incidents). I may just up my intake of Vitamin D. More research for me. Here's to a full recovery and getting back to You!!
ReplyDeleteVera--Thank you for your sympathy and concern. Everyone's support means a great deal to me as the Interwebs are sometimes my sole connection to Life much of the day.
DeleteYes, please do research for yourself about Vitamin D, and continue to supplement D3, especially if you have spoken to your doctor after your findings. Normal levels fall between 31-80 ng/ml; I was at 20.
As far as people not knowing, I am by nature a very private individual when it comes to such things. It's odd, since I have an online presence here, but I rarely share things of this intimacy. I felt that my writing has been suffering in quality, but other than that and its frequency, there is no way anyone could have known. Thank you again for your support.
I am so sorry to hear you have been ailing, even worse, that it went undiagnosed for so long. I have been taking 2000 IU of D-3 as a daily maintenance dose for about 7 years now. Taking the D-3 has changed how I feel in my body, mind, and my general outlook on life. Praying that it does the same for you and that you have a speedy recovery. I'll be waiting...
ReplyDeleteDenise--Thank you for your kind words here. Your testimony regarding Vitamin D3 encourages me and makes me hopeful. I'm so glad you'll be here when I am truly back.
DeleteOMG, I'm so sorry for what you've been through! And I'm glad you finally have an answer and some help. Please keep writing about your progress.
ReplyDeleteGammyjill--Thank you, Jill. I'm grateful to have answers at last, too. I will check in once I start to turn the corner and feel some improvement. And then, I want things to be Business As Usual here at the Dept.
DeleteWow, that is an amazing story. I'm glad you thought to ask your friend about seeing someone at Cleveland, and that they were able to determine exactly what was happening.
ReplyDeleteGetting well is a long process, but more important than anything else. So take your time, and let us know when you are feeling better. We'll be here.
Bridget--Yes, I am so grateful to her and her invaluable and priceless help. She is my angel, no doubt about that.
DeleteThank you for your kind words here; they mean so much to me. I'm glad to know that my Friends Afar will be here for me upon my return.
Dearest Nance,
ReplyDeleteReally shocked and saddened to hear of your suffering and long odyssey of searching for a doctor who could finally help you. I have been through spates of feeling incredible fatigue and it is indeed as depressing as it is debilitating. Almost a vicious circle where feeling so weak is depressing and feeling so depressed is debilitating. And I am a firm believer in the mental aspect/reaction to illness. I am convinced that one feeds off the other.
So glad that the Vitamin D supplement will eventually put you back on track with your health and your usual routine. I wish you patience and peace of mind as we stop somewhere waiting for you. We are always here.
Virtual hugs (((( )))))
-Catherine
Dear Ortizzle--Yes, there is a term for it--the miracle doctor called it "reactive depression" or something reactive depression (maybe situtational- or illness- , I don't recall), and I've got some of that, too. I work hard at trying to reclaim the flotsam and jetsam of my life as it floats by. I keep trying to piece together some semblance of My Life, but it is strangely impossible right now. Holding the hairdryer for more than two minutes is an insurmountable task today. And Rick made dinner last night; I could not get off the couch at all except to find the bed at 8:30.
DeleteIt is terrible to be so useless.
Thank you for your sympathy and concern. I know this is a very busy time for you (but when is it not?). I look forward to Better Times Together. XXOO
Dear, dear Nance,
ReplyDeleteI am so sorry to hear this from you. But also happy to hear you were finally diagnosed. As soon as you started describing your symptoms, I knew immediately what it was as I am still recovering from the same situation. Fortunately I found a savvy older female doctor who keyed in on my symptoms right away. I do hope you find relief and are able to get your life back soon. It's no fun feeling like your 95 years old! Hang in there, Lady. It will get better.
Karen--Oh, how nice to see you here again. But how unfortunate that you are here to share this news! I will say, however, that I take some comfort in knowing that I am not alone and that a friend can empathize/commiserate. And knows it does get better. It has been ages since we saw one another. I hope we can correct that this summer. Take care. Thank you for chiming in.
DeleteHi Nance- Sorry to hear your story. My PCP put me on Vitamin D a decade ago when blood tests showed deficiency, though I didn't have symptoms of anything really. I always point out my dermatologist wants me OUT of the sun, but my Vitamin D deficiency says I should get MORE sun! Anyway, my now-retired PCP was on the bandwagon of Vit D being a sort of wonder drug - good for what ails you, and I just read an extensive article in the NYT with some interesting links evidently moderating that view:
ReplyDeletehttps://www.nytimes.com/2017/04/10/health/vitamin-d-deficiency-supplements.html?_r=0
Regardless, even if it acts as a working placebo for you, I hope it relieves some of your symptoms! Good luck!
-Dean
Hi, Dean--Nice to see you here again. Thanks for the link. That story is certainly an outlier in all the research I have read. Interesting. I'm very glad that you have not experienced any symptoms; I hope you continue on your path of Good Health indefinitely!
DeleteBefore I saw my rheumatologist, I saw a chiropractor, who suggested I take 5k ICU of D3. My symptoms got SO much worse, so fast, that I stopped taking it. I've been tested for D and am within the normal range, though I've had doctors tell me they would like it to be higher. I now take a multi vitamin that included some D3, but I'm afraid to increase my dosage. I do not wear sunscreen, in the hopes that the natural D I get from old SOL will be the right amount for me. It's a tricky business, isn't it?
ReplyDeleteI do hope that this is the right answer for you. And I think it is.a service to put the information out here, in case one of your readers, or a friend of theirs, has a similar issue. Here's to feeling better, and sooner rather than later!
J@jj.com-- There are so many variables. I remember seeing my very kind chiropractor for my migraines and neck issues, and one adjustment gave me a violent and immediate migraine. It was out of left field--I had been seeing him for many months until that point. I never went back after that--too scared of it happening again.
DeleteBut your experience--and that of mine, and of some of the commentors here--highlights the difficulty of so many people and their search for wellness. There really is no One Size Fits All when it comes to both diagnoses and treatments. It's so important to be an advocate for your own health and treatment, as I know you are. And I so appreciate the help you have offered me in my own Odyssey.
Oh, Nance, I am so sorry to hear all of this. The uncertainty, fear, and frustration you were feeling must have been almost as bad as (or maybe worse than?) the physical symptoms. I'm glad you've found an answer, but I'm sorry it's going to be such a slow and tedious path back to 'normal.' As you can imagine in cloudy England, especially in the winter when we have such short days (sunrise around 8, sun starts setting around 3.00-3.30), people pay attention to Vitamin D, and one hears it mentioned pretty frequently. All those old books I read growing up where children were being made to take cod liver oil finally made sense to me once I realised it was meant to be a Vit. D supplement. And all those daily walks out in the fresh air and sunshine...probably the same thing. Will be sending healing vibes from chilly, cloudy Bath, and look forward to your return to health and energy!xx
ReplyDeleteMsCaroline--Thank you for your sympathy and kindness. Ironically, both Jared and I thought of England, too, upon hearing my diagnosis. But we thought of Charles Dickens' England and sooty skies and rickets and sickly, pale Victorian children confined to beds and wheeled chairs and yes, of big spoonsful of cod liver oil.
DeleteAnd yes, too, to the fear of feeling as if I was slowly watching my mind slip away by degrees, along with my balance and ability to READ BOOKS. There was only so much fighting I could do.
Lately, now on the megadose for a few weeks, the deep pain has abated. My stamina and weakness is still there, but at least I see progress. It's good to feel hope.
Correction (sigh)--My POOR stamina and weakness....
DeleteAGAIN correction (SIGH)--My poor stamina and weakness ARE still there...
DeleteYou've really been through the mill! Glad to hear you have a diagnosis and remedy. Had been hearing in the news concerns about Vitamin D deficiencies, especially with people using sun screens so much now, so really behooves us to take care getting plenty of that vitamin from various sources, supplements if needed. Since I'm fair skinned as are many of my family, I expect we should take special care since we probably use the sun screens and limit our sun exposure more. All those symptoms you experience would be difficult to find an exact cause.
ReplyDeletejoared--You know, I've heard nothing at all, still to this day. And I watch the news twice daily--local and national. And read the papers. Sigh.
DeleteSunscreen is definitely limiting the natural source of Vitamin D for many, many people. And those of us in the northern areas where we get so much cloudy, grey weather a great deal of the year are most susceptible to the deficiency since there is not a great deal of D naturally occurring in foods. I won't bore you with any more info because, well--Internet! So easy to do your own research if you are concerned/interested.
But yes, my symptoms are markers for so many other illnesses/syndromes. I am daily grateful for this doctor being so thorough and knowledgeable.