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Osteomalacia recovery: When pelvises attack

September 22, 2011

Yesterday, I linked to an absolutely horrible-sounding abstract, Expression of pain in children with autism. [Clin J Pain. 2004 Mar-Apr] – PubMed – NCBI. I forgot to mention that, though I am not wanting to pay to look at it further (gee, do I sometimes miss ready access to university library terminals with subscriptions to just about everything!), it did not even sound like the kids in question were needing venepuncture anyway, with the researchers getting called every time some kid who was part of the 1% or so diagnosed autistic needed that particular procedure. Sounds improbable, even with the volume of patients through most teaching hospitals. I may be wrong; still, amazing something that involved inflicting pain on children got past an ethics committee, especially with neuroprivileged kids involved. :-|

Bit of a summary there: they were trying to disprove the common, dehumanizing misconception (again, this kind of empathy deficit does not just hurt humans!) that autistic people do not feel pain. By hurting little kids with a medical procedure they may or may not have needed in the first place, and watching how they reacted. I wish I were joking. Parents were apparently so caught up in the idea that their own poor children did not express/feel pain that they could not see a stronger facial reaction to it than from the control group. And we’re supposed to be the ones without empathy or expression-reading capabilities…

I also linked to an earlier post on disability and gaslighting, which is very, very relevant here. Even though I was not diagnosed as a kid (and am still not keen on the idea of dealing with mental health professionals ever again), for a variety of reasons I learned to distrust my own bodily perceptions–including pain. As I wrote about recently, the professional tendency to denigrate people’s symptoms and declare just about anything psychosomatic, based on some pretty dodgy, culture-bound assumptions–especially if you belong to certain groups, or are perceived to–absolutely encourages this kind of split and distrust of your body and mind (never mind spirit, etc.). The same goes with trying to blame every health problem, and especially pain, on a person’s weight: that’s an easy answer that saves them actually having to think or do any work, and is just plain unconscionable. It hurts a lot of people, and this was one of the things that made me so enraged again yesterday.

A couple of further almost PSA-type posts going into more detail about some of the problems a (shockingly common and underdiagnosed) vitamin D deficiency can cause–but which usually get overlooked/dismissed/gaslighted–have actually gotten mothballed because they turned so long and ranty, and I did not have the spoons to sort them out. With any luck, that will happen soon, because maybe they can help someone else avoid years of pain, fatigue, and poor quality of life. All of the other similar type posts on health topics I have done keep getting lots and lots of hits, frequently with search terms that make me want to cry and get all stabby on their doctors. Maybe putting the information together is helping someone; gods know there are enough people who do need help.

With this one, I am not intending to whine and Poor Me. (Hesitate to mention a number of things, actually, after sometimes too-handy assumptions that this is inevitably why anyone mentions any kind of problem.) No, I am not even mostly outraged on my own behalf–though that too, naturally–but because I suspect the kinds of problems I am running into now are way too common, poorly managed if diagnosed at all, and cause a lot of people an awful lot of suffering when nobody has put the patterns together. And the misdiagnosis/nondiagnosis and lack of treatment can lead to cascading bad health effects, which will come crashing down on you sooner or later.

In yesterday’s post, I also mentioned that I was in difficult-to-manage pain from what is most likely a fracture. (Looking more like multiple, actually.) Today, I’ve got slightly more effective pain relief–after a pretty horrible trip out yesterday evening–and am enough less upset about the whole situation to (hopefully) avoid the angry word vomit approach to writing.

As I have written some about before, I have had a finally lab-confirmed vitamin D deficiency to varying degrees for probably 15 years, since I was given meds that made me prone to photosensitivity and overheating (along with years of anticonvulsants which can, themselves, cause osteomalacia or osteoporosis.) With the symptoms getting a lot worse (and consistently dismissed/gaslighted) since I moved to the Land of No Sun, where even a majority of White Britons with less UV-hungry skin types have deficiency/insufficiency problems. (In that post, I also wrote about how it looks like it’s more usual than not for youngish immigrant women, in particular, with skin types that need more UV exposure to develop problems including osteomalacia–though studies have found that even though this is a well-known problem, among women who did fit the usual ethnic profiles they are looking for you got “90.1% of patients with an initial diagnosis related to somatisation”.)  This will affect every body system, since it is really a steroid hormone–similar to estrogen, testosterone, etc.–and not a vitamin per se.

Vitamin D deficiency is actually very common, but it must be severe and prolonged for osteomalacia to develop. The lack of vitamin D also leads to muscle weakness, which is also part of osteomalacia. #

And osteomalacia hurts like a sonofabitch, in a noninflammatory way that NSAIDs do not help. Exercise will only make the problem worse, if you’ve got weak, spasmy muscles which get full of myofacial trigger points to protect themselves and bendy bones that are also prone to breaking. I have hurt myself multiple, multiple times working under the “no pain, no gain”, “exercise is inherently good for musculoskeletal problems” (*headdesk*) assumptions also trotted out by medical professionals–besides just being physically hyperactive by nature. (Hint: if you normally have trouble sitting still, laziness is unlikely to be the problem if you become less active. I have hurt myself a lot over the years, beating myself/getting beaten over the head with Laziness.) The usual kinds of physical therapy based on strengthening muscles will hurt you, can/will make totally different parts of your body hurt by setting up cascades of spasm, and can also cause fractures. I am not even going into stories there ATM.

What I am experiencing now seems to be a result of having had a classic pattern of deficiency symptoms gaslighted, chucked under the fibromyalgia umbrella, and the pain totally untreated except for a couple of acute injuries, until I ended up with signs I keep reading are associated with severe hypocalcemia/hypomagnesemia and severe osteomalacia from the body keeping trying to boost blood levels of those electrolytes by sucking the minerals out of bones. My shins are not quite straight anymore, and I am slightly knock-kneed now.

According to one source:

Osteomalacia causes general weakening and softening of the bones, which is improved by treatment. However, until treated, the bones are more prone to fractures (breaks). Severe osteomalacia can cause small fractures in more than one place at a time – for example, in the pelvis, thigh or ribs. Prolonged osteomalacia or osteomalacia treated very late, can cause permanent bone deformities such as kyphosis (bending of the spine) or curving of the long bones in the arms and legs. Osteomalacia sometimes causes low levels of calcium in the blood. Theoretically, low calcium can lead to muscle spasms (cramps) or seizures – but in practice this is unlikely to happen.

Likely or not (and from what I’ve read elsewhere, it is indeed likely if the problem is bad enough), I have gotten sometimes weeks of tetany, with muscles mostly around my pelvis, back, and legs/feet staying locked in spasm thanks to screwed-up electrolytes; and seizures. Low magnesium causes exactly the same things, and the two work together while both being depleted by a D deficiency. “Neuromuscular irritability” is putting it very mildly.

But, the main reason I quoted that is because of the “multiple fractures” bit. I did not want to think so, because that’s still pretty scary, but I’ve still got some. Reading though things, you keep reading prognoses of feeling totally better with a few months of vitamin D and mineral supplementation–but almost all the cases mentioned are people with shorter-term problems. I mean, even in that study of immigrant women who were getting brushed off and gaslighted:

The mean duration of symptoms before diagnosis was 2.53 years (SD 3.20). The duration of symptoms after seeing a physician in our centre was 1.87 years (SD 2.20). Nevertheless, in retrospect, the majority of complaints were quite typical of hypovitaminosis D from the outset.

Bolding added there. That bit was not totally relevant, but in a way it really is. But, the point is, a longer-term problem that has gotten pretty severe by all descriptions will take longer to recover from. (And in this case, I’ve only been on D supplements since February or March, with low levels still when it was tested in IIRC April.) It’s hard not to get impatient, though, and start gaslighting yourself again over not feeling totally better and getting more active again as quickly as maybe you “should”.

When it turns out that the lingering pain that makes it hard to function sometimes is from not only “Hungry Bone Syndrome” (which is just what it sounds like–slurping up minerals to rebuild themselves) crashing your electrolytes, but pelvic insufficiency fractures that have not been able to heal up properly yet, and keep getting reinjured.

Overall, I’ve been feeling a bit better and less spasmy except for certain times (more on that in a bit), but I have kept having an abominably achy pelvis all around–and feeling like I’ve been kicked straight in the flat of my butt with steel-toed boots. Sometimes it’s better, sometimes it’s a lot worse–but it’s pretty much always there. Sometimes I get deep itching/pins-and-needles sensations in my sacrum. Not too surprisingly, I have kept trying to push through it and gotten impatient because, yeah, that really is hard to live with and do what you want to do.

Months ago, I wrote about getting an obvious fracture from Dogster Snuggles bunny-kicking me in the groin. That still periodically hurts (ha! will make more sense shortly), though not nearly as often as the sacrum.

Just about a week ago, when the damned sacrum really started acting up again, it finally occurred to me that maybe it got broken as well, before I realized that the bone might be fragile. Mitigating factor in not thinking of it before: I started out with very large, dense bones that left me with nasty soft tissue damage instead of breaking. Orthopods were impressed. I am klutzy, and the only bones I ever broke before this crap were in my hands and feet–just tore joints elsewhere to smithereens, because something’s got to give! Without the bone mass (and BMI from it) starting out (and especially with multiple reasons to think my bones were demineralized before this, including adult-diagnosed celiac with no nutrient testing or bone scans done), I would probably have been in one hell of a shape well before now. I am still not entirely used to the idea of my bones being extra-vulnerable to fracture, and it kind of freaks me out.

Last August, I had an incident that I thought at the time had messed up one or more sacroiliac ligaments. (With a previous history of injury there.):

Sunday night, I got what would have to qualify as the opposite of a useful chiropractic adjustment, quite unintentionally. [Mr. U] was having a look at something on my shoulder blade, and leaned on his forearm in just the wrong way on my behind: CRUNK! goes my left sacroiliac joint.

Erm, no. I figured out a few weeks ago that maybe it had been the bone instead, which had continued to cause the “feel like I’ve been kicked hard in the ass” problems by healing crooked or something. Yay, sacral insufficiency fractures! :( (Another thing consistently described as causing severe pain, BTW!) More to the point, I ran across this when I was looking into the problem a few days ago:

The fractures can heal as demonstrated in 4 of 6 fractures in 3 patients, can persist over 1 year without significant changes or can progress to pseudoarthrosis with bone destruction similar to neuropathic joint disease.

I really do not want to think about the last bit. But, Occam’s Razor would seem to apply. With the itching and whatnot in the bone, I think it’s trying to heal up, but is periodically getting a lack of minerals to rebuild, along with serious strain on a regular basis. From another piece on “normal” pelvic fractures without demineralized bone, which also mentions rehab exercises that are not appropriate for someone with osteomalacia:

Bone healing may occur within 6 to 12 weeks; however, the bone strength and the ability of the bone to sustain a heavy load may take up to a year (Chapman). Once healing has occurred, the individual may resume full activities of daily living. It is important to instruct the individual not to overload the fracture site until the bone has regained its full strength. The treating physician should guide the resumption of heavy work and sports.

I mentioned strain and sometimes a lack of minerals available. (I have increased the calcium and magnesium now, because I was getting nasty muscle twitches and tingling around the mouth besides spasms again.) Why is this? Attacks of “hungry bone” going along with normal hormonal fluctuations, where higher levels of estrogen lead to more minerals getting added to bone tissue–which, AFAICT, is behind people being known* to get truly horrible menstrual cramps from their electrolytes crashing. Basically, even though it is not as torturous as it used to be before I figured out the D deficiency at all and my whole lower body would go into tetany–it still feels like my pelvis is getting treated like a wishbone in multiple directions, starting about a week before my period and intensifying from there. Because that is exactly what is happening–and there is very little attention paid to this by the medical profession. I will try to finish a post I started months ago on this kind of thing, but it is a serious problem.

Muscles go into serious spasm and pull on already sore bones. When the bones in question have part-healed insufficiency fractures, it can get ugly. Simples, eh? That’s several steps of pattern connection beyond what most doctors seem to be able to handle. Seriously. Especially when it comes to women’s health problems, and the generally poor understanding/low priority/malpractice-level dismissal thereof. Even worse, a menstruating demographic is also a prime demographic for osteomalacia from vitamin D deficiency or malabsorption problems from bariatric surgery or Orlistat/Xenical/”over-the-counter as Alli[2] by GlaxoSmithKline in the United Kingdom and the United States” or anything else that affects absorption of nutrients.

Source. Muscle attachment points on the sacrum. Those are all muscles which will spasm and give you some of the chronic pelvic and lower back pain that goes along with the osteomalacia–and they are well-placed to break the edges of the bone from yanking on it. This is a problem all around the pelvis, with all the muscles attaching there which will spasm.

I’ll repeat that, because it is just so overlooked/gaslighted: yes, OTT cramps which are well-known to come from vitamin D deficiency and osteomalacia can basically tear a weakened pelvis apart. I would not be surprised if the serious strain from muscles in tetany pulling on your bones could cause insufficiency fractures in the first place, but it definitely seems to keep existing ones from healing. I am not a medical professional, but I am sure going to try supplementing more heavily with minerals when my hormonal cycle is trying to build more bone, in hopes that may help with this problem.

“The adductors and nearby muscles” Source. Talk about the wishbone effect: the hip adductors are one of the first things to go screwy with osteomalacia. When they’re tight and/or in spasm, look where they’re pulling! (Yeah, the inner knee pain that was about to drive me crazy before and gave me a trick knee that kept going out from under me suddenly was/is coming from the gracilis.) And, indeed, if one thing in or around the pelvis is wanting to go into spasm, everything around it does too.

So, right now, I have the previous dog kick fracture, that sacral fracture (with another less serious one on the other side–they’re frequently symmetric), and some damned sit bone problem which I have no idea how it happened–all acting like fresh fractures, with serious inflammation and pain. One side of my butt is swollen about twice as big as the other, which is also a little swollen.  While I’ve joked about needing gluteal orthotics–since I was an inverted triangle without padding back there, even before the muscles started wasting from this–this is definitely not the way to get a more rounded booty. ;)  I can feel the bone edges/ends moving in some cases if I am not careful, and can definitely feel where the sacrum is not even, which has been the case all along actually.

And there is not much they can do about pelvic insufficiency fractures, if I did not have bad enough medical PTSD from shitty treatment by now that I am unwilling to let them prod at my hurting pelvis at all. Maybe stronger pain relief, but I wouldn’t bet on that either. Especially since they do not show up on regular X-rays too well.

Speaking of pain, one observation definitely still stands from that post when I thought one sacroiliac joint got messed up, but the sacrum seems to have broken:

One disconcerting thing about this, which I also noticed with the severely sprained ankle a while back? A sacroiliac injury like this is considered to cause severe pain, and after the first night, it’s striking me as annoying but manageable. Even on top of the other chronic pain. A good demonstration that I’m scarily accustomed to dealing with pain by now. “Scarily” because that’s exactly how my mom missed that she had bone cancer until it was way too late.

Yep. I get very angry whenever I see something else I have been dealing with and had brushed off described as “severe”, not least the pain. Pile several of those up, and no wonder I haven’t been able to function as well as I’d like and keep being exhausted and scatterbrained. Nausea is another reason I got into a problem with not eating enough.  Making a big deal out of nothing, my bony broke butt. And I suspect that, with the various kinds of disability-excused dismissal and gaslighting going on, this kind of experience is far from unusual.

After a while, what are you supposed to do but try to get on with things? If nothing else, you’d get tired of screaming and crying all the time, and it would come across as kind of rude. More medical professionals really need to recognize that. And do less assuming that if you do scream and cry, it must be from some kind of mental health problem totally unrelated to, erm, the physical pain you’re trying to get help with. There’s really not much way to win there.

Though I’m not good at the whole self-advocacy thing in medical settings, I’m trying to learn better ways of dealing with the brushoffs and some of the fear that I just won’t have much say in my own medical treatment. If you’re suffering** with this kind of chronic pain problem, please don’t let it or them grind you down. Easier said than done sometimes, indeed, but crucial.

ETA 13 October:

The sacrum has mostly calmed down again for now, and the previous dog kick. The one that is lingering the longest feels like it’s not actually the “sit bone”, but closer to the inside like Case 2 here. (Yep, all the cases on WikiRadiography  seem to be of elderly women…then there’s me. :-|)

The little arrow is a bit hard to see. But, it's near the inside of one of the ringy bits you sit on. (That's a rear view.)

As you can probably tell by looking, that seems to be a weak structural point. I still have no idea how that happened. It’s still pretty inflamed, and standing up for long is not a good idea at all. If I sit wrong, I can feel it shift, but it doesn’t seem to be displaced much otherwise. Not much to be done for it besides rest, plenty of minerals, and anti-inflammatories. (Preferably with codeine sometimes, yeah.)

A memory foam doughnut cushion has helped a lot, actually a rectangular one. (And you can bet I paid an extra £2 for express shipping.) If I can get one of the cats off it when I want to sit down, that is. :) (While they’re apparently not so great for coccyx pain, in spite of the usual recommendations, that is more in a place the central cutout will take pressure off.) it’s a big enough improvement overall that I wish I’d gotten at least a regular memory foam seat cushion well before this! Sitting is still not that comfortable, so I have mostly been lying in bed with the netbook and playing games, though, since my language abilities seem to be really scrambled. The things it will take to get some people off their feet… ;)

I’ve been out exactly once since posting this, and haven’t wanted to try that again. It’s frustrating not to be able to do much, but at least I feel like there’s a good excuse now! *wry smile*

____________

* That case would be with hypoparathyroidism, while a vitamin D deficiency will cause secondary hyperparathyroidism. “Secondary hyperparathyroidism can also result from malabsorption (chronic pancreatitis, small bowel disease, malabsorption-dependent bariatric surgery) in that the fat soluble vitamin D can not get reabsorbed. This leads to hypocalcemia and a subsequent increase in parathyroid hormone secretion in an attempt to increase the serum calcium levels.” In spite of that, the body can’t use the calcium without D, for whatever reason it’s unavailable–and often levels will stay low enough to give you nasty symptoms–so it behaves more like hypoparathyroidism in that respect. Yay, tricky endocrine stuff. :-|

** While I would not say that somebody is suffering from Disability X, it’s hard to describe dealing with chronic pain in any other way. Even applying mindfulness.

14 Comments leave one →
  1. September 22, 2011 6:47 am

    Gah. So much familiar here, from other things. So little I know how to say right now. Other than my old posts The Summer Thing and When doctors ignore pain, and new agers worse than ignore it. Especially that second one. A lot.

    • urocyon permalink*
      September 28, 2011 4:40 pm

      Sorry for the late reply (yet again). I’ve mostly been doing gaming instead of basically anything to do with words lately. Lots of rambling happening, too.

      Actually, I kept thinking of you writing this one. You’ve run into more of it with more problems–and, yeah, more reason for outrage on other people’s behalf, just from what you’ve written about. :( (I’ve also been avoiding the topic somewhat in the interests of emotional regulation, because I’m going through a spell where just thinking about it gets me enraged–and burning myself out with anger about things that not much immediate can be done about has been a persistent problem. Also more pessimistic about trying to get help with anything more complicated than a sinus infection, not too surprisingly.)

      Thanks for the links, because I needed to reread those. I’m sorry you ran into that set of New Agey attitudes in a way that hurt you. I get irritated at the weird victim-blaming “positive thinking” thing, but have never been directly harmed by it in the same way. (Yet.) My brain is still hurting at that contorted mess of back pain, kundalini, and autism from my first reading of the second post. (I just can’t find much in the way of words to address the “summer” post. Argh.)

      In the second one there, you put it a lot more concisely than I managed:
      I have frequently been, the past few months, in a state of strong but controlled rage. What anyone reading this has to understand is that the rage is not only for my own situation, but at how large the situation, and similar and worse situations, are, for a whole lot of people in the world. If it were only my own situation… well then I might not need to write about it so much, and I wouldn’t be this mad about it.

      Exactly. This kind of thing is a big enough problem with people who do not have other disabilities and/or confounding factors going on. Unexpected responses to pain and/or illness is enough. Throw in something else complicating things, on top of the existing lousy attitudes, and the patient is almost guaranteed to suffer because of professionals’ little mental conniptions and too-frequent lack of empathy. (There is professional distance so you can cope with being around other people’s suffering day in and day out, and then there is the level to which some take this.)

      I didn’t even know fully how much pain I was in, or that I was in pain so severe that most people would stay in bed, call their doctor, and not even attempt anything close to what I was attempting.

      Oh yeah. Actually, reading those posts (and some others) made me feel less crazy before. It’s really not just you, or me, or… :-| (Distressing in a different way.) If the pain or other physical problem is bad enough that I’m even mentioning it, well.

  2. JIll Pellegrini permalink
    October 10, 2011 6:17 pm

    I have been suffering severe pain for the last 2 yrs. The only way I could describe it to people was to say..”I feel like I am broken from the waist down.” There were a slew of other things also, muscle tightening around the torso, breathing problems, muscle weakness, muscle wasting…very visibly obvious in my left arm and left leg. One butt cheek is smaller than the other. Horrible mestrual cramps, (endometeriosis & complex ovarian cysts don’t help much either), photophobia, dry eyes, dry mouth, clothing is uncomfortable, (don’t know if that has anything to do w/ vit d. deficiency, but sleeves, when they rub against my arms feel very tight…hard to explain) But…the pelvic, hip bone pain is off the charts. The tightness around my middle is awful. March 2012, will be 3 yrs. of hell. I cry almost every day. I have severe fatigue also. I have been put on pain meds (Lortab) and those help..they don’t make it better, but give me a little relief. I would have lost my crap if not for those…but honestly, they don’t help that much. but do make it somewhat manageable. I have to work & have worked during all this. Noone understands because I look fine. But the truth is, I am at my wits end. Last yr, was put on 50k ius of vit d…after the 2nd week, (the 2nd dose) I was in worse pain, worse muscle tightening & severe abdominal pain. I stopped the vit d. I did start again w/ 400 ius daily for 3 mos. That was’nt helping, so I began using 1k d3 drops daily. I had a higher energy level, but, still severe pain. I have finally gotten to the endo & am hopeful that he will fix me. I am frustrated that the gp I had yrs ago, brushed this off…the one I have now, is very sympathetic & is a wonderful man, just does’nt know how to fix me. My endo is awesome. He ordered many blood tests, but w/out having insurance makes it hard to pursue this. I have suspected tetany & rickets (osteomalacia) for the past yr. When my endo said “yes” to these assumptions, I wanted to break down & cry. I don’t want sympathy, but I dread having to work like this. I just want to curl up in a ball & be woken up when the nightmare is over. Much love to anyone going through this. This is the hardest thing I have ever had to deal with, & I have had many health issues through the years. I hope everyone gets the help they need & all heal. God bless you all!! (I also get the tingly feeling around the mouth….could’nt figure that one out!)

    • urocyon permalink*
      October 13, 2011 2:02 am

      Sorry I haven’t been able to write a proper reply yet! I’ll try to get to it tomorrow. (Just didn’t want you to think I wasn’t interested, after the effort it must have taken to write your comment.) It sure does sound like you’ve gone through a lot with this. :(

      I hope everyone gets the help they need & all heal. God bless you all!!

      For you too!

  3. JIll Pellegrini permalink
    October 10, 2011 6:18 pm

    (PS) this was a great blog! I felt as though I could have written it myself.!! Thanks for posting about this!

  4. October 13, 2011 5:19 am

    Wow wow wow. Your experiences are creepily familiar. I Do have a minor D definciency. Or at least, I think it was minor. my Rheumy had me on Vitamin D, then I lost insurance and housing and… well, I haven’t been able to take care fo myself properly. so we’ll see when the new tests come in.

    Also, I forwarded this post to my mum.

    *hugs if you want, kitten purrs if not*

  5. October 20, 2011 2:55 am

    I have access to the full article through my university, and they didn’t just poke autistic kids for the sole purpose of seeing if they could feel pain. These kids were part of another study seeing whether hormone treatment could reduce their autistic traits, and they decided to gather this data incidentally while they were at it. The kids would’ve gotten poked anyway as part of this other study.

    • October 20, 2011 3:19 am

      Oh, ew, the hormone treatment studies are pretty disturbing. have you seen the stuff that Alexander Cheezem gathered on it?

  6. April 26, 2012 8:58 pm

    This post was so important to me, I couldn’t even begin to explain. I’ve been investigating for YEARS what this pain I had was, why I’m 28 and couldn’t walk up the stairs or bend at the knees. Why my muscles were spasming and tight, but weak at the same time. I was just diagnosed with osteomalacia two days ago and started the first 50,000 IU dose of Vitamin D. It is incredibly relieving to see an answer. And also it is comforting to know that someone else understand that just because its “just a vitamin” doesnt mean you can fix it in a day, nor is the pain any less severe. Thanks for writing this. Hope all is well and you are feeling well!!

  7. Lot permalink
    March 3, 2013 11:56 am

    Wow thanks so much for posting all of this. This is by far the best source of information I’ve found. I was diagnosed with severe osteomalacia a few weeks ago, after two years of hip pain, general weakness, breathlessness, tiredness, etc. I’d also noticed it got worse around my period. I was only diagnosed in the end because my GP had read some article recently about this being more prevalent than ever, especially in the ‘young’ (I’m 35), and I’d mentioned the continuing pain in passing while at the GP for something else. I’m getting a bone scan tomorrow. I wasn’t gaslighted by doctors – they just didn’t know what they were looking at so I was referred to the wrong specialists who ran out of ideas. Then I kind of gave up on there being any answer, and just lived with it. I even tried to go jogging, and assumed the terrible shins splints for days afterwards were due to ill-fitting trainers. unfortunately, because I’d had some time off work (certified by my doctor) while the initial tests were going on, I got thoroughly gaslighted by my boss and colleagues. For the last year my boss has been trying to demote me on the basis that either I was a shirker who had only pretended to be ill, or my illness was all in my mind and I just can’t deal with stress – i.e. my time off work was due to a breakdown. Unsurprisingly, being put through disciplinary processes was pretty stressful. But when I pointed that out, it just served to confirm their view! My boss said “some people deal with stress better than others” implying I am an unusually weak person who doesn’t deserve my job (which by the way I do very well). So… it’s very satisfying to have the diagnosis, finally. However, I don’t think it’s going to undo all the damage caused. I’m looking for other jobs now. It never fails to surprise me how quickly people can move from sympathy to judgement, and, like you say, how you can end up distrusting your own experience. I wondered whether I really was, at least in part, a lazy moaning oversensitive malingerer. Once my boss and HR had spread that rumour around the office everyone else believed that – so who was I to disagree? I became ashamed of the time I had taken off work, and ashamed of the continuing pain. It became a dirty secret. If my bone scan shows fractures I will know I’m actually incredibly hardcore – in the mind if not the body right now. I’d like to see my boss walk around for two years with a fractured hip without complaining. Thanks again, your article has really helped to restore my confidence in myself!

  8. November 30, 2013 5:31 pm

    Awesome! Its actually amazing article, I have got much clear idea
    about from this piece of writing.

  9. Anna permalink
    July 9, 2014 9:54 pm

    Thank you for this article. My gp hasn’t sent me for a bone scan should I ask? My bones hurt so much. I hope you all are recovering well xx

  10. November 3, 2014 12:38 am

    I can so relate to you! I am a 48 year old female my DNA tests showed Vitamin-D Dependent Rickets both my parents had a mutation and I received a doubly whammy I was born with this and now just finding out all those pain and aches and doctors over the years and not one Dr. ever diagnosed me with this never cared to test the vitd levels!! I participated in 23andme DNA study on Myeloproliferative neoplasm which I was diagnosed with Mastocytosis and then I found out more and more with the dna results.. The pain is very relentless the worse on me is pelvis I do not know if it will ever get better but… I started my vitd3 therapy in January and I had such horrible bone pain seeing the calcium has to go back in… bigsigh… but.. I can tell my forearms are wrists the swelling has went down and keeping slowly going down… But… reading this was Like i was reading about myself .I have faith this will get better.. Take care dear …

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