POZ Community Forums
Main Forums => Living With HIV => Topic started by: wolfter on February 22, 2013, 01:55:44 pm
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I've already sent my ID doctor an email with my concerns but I wonder how much knowledge I can ascertain in the mean time. I'm thinking there has to be an underlying issues with my skeletal system especially since my foot hasn't healed yet.
I had the little fall on the stairs that caused a broken wrist and when I went to the new ortho doctor, I discovered I also had a broken toe. I had stubbed it lightly but wasn't too concerned. It became discolored but there wasn't much pain as I still don't have feeeling in that entire area of my foot.
It just seems like my bones are not holding up very well. Last week I broke a piece of tooth just from flossing.
I added calcium a couple of months ago to my diet along with a multi vitamin and fish oil.
Another issue that I've never really wished to discuss here before is the whole dieting thing. Let's just say I've always had issues there and during stressful times, it manifests again. I've focused on eating everyday and not starving. I pretty much know this had to contribute to my issues and have tried to address it.
This past week has just left me in an extremely annoyed state of mind.
Thanks guys for any thoughtful responses.
Wolfie
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Have you had a dexa scan? Have your vit-d levels been checked during your routine blood/lab tests lately?
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Another issue that I've never really wished to discuss here before is the whole dieting thing. Let's just say I've always had issues there and during stressful times, it manifests again. I've focused on eating everyday and not starving. I pretty much know this had to contribute to my issues and have tried to address it.
Could you clarify this a bit? Im not following this part about dieting issues ^
Also Like P mentions you need to have your D levels checked if you havent yet. You actually said you were going to do this backwhen I brought it up during your broken leg thingy. Write it down so you don't forget at your next doctors visit. Im surprised none of them have suggested this yet given all the breaks and stuff. My doc checks VitD levels yearly, and a few months ago she found my Vit D levels low so she prescribed me the high dose Vit D.
-W
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Could you clarify this a bit? Im not following this part about dieting issues ^
I think wolfie may be referring to studies that show HIV patients that are on the thin side have more bone issues than the plump girls. I think he's previously stated that in his attempt not to be overweight and have issues with lipids and other things connected with that he's focused, perhaps to his detriment, on being less heavy.
Of course, one need not be one or the other -- "normal" weight for one's height is a fairly large span depending on one's natural body build (ecto vs. endomorph), but my physician prefers that I be on the upper side of "normal" instead of the lower side due to my past history of not being able to keep weight on.
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I just went through all my labs and there's no results listed for Vitamin D. Just calcium levels which are within normal ranges. The surgeon's report indicates there's marked osteopenia in my foot, but I believe that would be normal due to non use.
My doctor is ordering a dexa scan, but I've not rec'd the referral yet.
The reason I mention the extreme dieting is that I'm researching how much that affects the skeletal system long term.
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I did find some interesting articles on bone fractures relating to being thin. I guess it makes sense that the potential for fractures is greater is you don't have cushioning.
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I'm also confused with your first post in this thread -- did you fall again or was the comment about the earlier fall?
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I'm also confused with your first post in this thread -- did you fall again or was the comment about the earlier fall?
The broken wrist was last month, but when I went to the new doctor Tuesday, the new xrays showed that my toe is also broken. That was caused by a simple bump into furniture.
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The broken wrist was last month, but when I went to the new doctor Tuesday, the new xrays showed that my toe is also broken. That was caused by a simple bump into furniture.
But you also had a fall last year, right? Sorry, I'm starting to get muddled with all of the separate events during the past 12 months or however long since it all started. I apologize.
I guess I'm just worried that if there has been more than one fall that something else is going on like with your balance? But I'm glad to hear you will be having a dexa scan.
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Wow MissP, awesome recall. I forgot about having balance issues and all the falls that I had before my bad injury in September. I referred to it as jelly leg as it would just give out for no reason that was obvious. I would be walking along and it would just give out for no reason.
That happened 4 - 5 times over several months.
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But you also had a fall last year, right? Sorry, I'm starting to get muddled with all of the separate events during the past 12 months or however long since it all started. I apologize.
I think that was due to his brother, remember.
As far as a broken toe, I have broke both my little toes over the years. I think its more common than people realize. Btw, there is nothing they really do for them, at least not mine.
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I think that was due to his brother, remember.
No, but before that car thing something else had happened with a fall.
Wow MissP, awesome recall. I forgot about having balance issues and all the falls that I had before my bad injury in September. I referred to it as jelly leg as it would just give out for no reason that was obvious. I would be walking along and it would just give out for no reason.
That happened 4 - 5 times over several months.
Well, if it was me I'd sort that out in addition to the bone issue/dexa scan. You shouldn't be having this many falls. Once or twice it's an accident. More than that it's something else.
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As far as a broken toe, I have broke both my little toes over the years. I think its more common than people realize. Btw, there is nothing they really do for them, at least not mine.
The doc said that since it was not a complete fracture, nothing was needed except time and not put much pressure on it.
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Geez Wolfie,
I had hoped you got some good news from your new doc.
I don't know anything about your bone issues but can only suggest you move a bit more slowly for awhile.
(http://i1341.photobucket.com/albums/o745/mjm711/tumblr_lxqal0cmb31r99z30o1_250_zpsc6e864a6.gif)
::)
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The only thing that can be done for a broken toe is to tape the broken one to the toe next to it. I've broken several of my toes throughout the years and haven't done anything for them. I've never sought medical attention either, knowing the limited treatment for that.
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I just went through all my labs and there's no results listed for Vitamin D.
I get checked for vitamin D, but I believe its not a part of the normal tests. Since I had a problem with low vitamin D, they check me twice a year. Request your doctor to check for it.
Also, ever since I have been in the VA healthcare, ( and Prior) on each visit, the doctor ask me if I had fallen or have balance issues, since the last visit, and how many times. This is a normal routine question, each time, every visit. They never fail to ask this,.. Oddly enough, the VA also ask me if I smoke @ each appointment. I haven't smoked in years. :P
Hugs--Ray
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I forgot to mention the results of the MRI. The prior diagnosis was a Lisfranc Injury and I needlessly worried and researched endlessly to find out that wasn't my situation. The continued swelling and pain is most likely due to a neuroma of the nerve that runs along the ankle.
That is actually good news as that would have required additional surgery.
Guess it's time to take my own repeated advice and insist my doctor address the underlying issues that's causing such easy fractures. I wrongly assumed since my calcium levels were OK, that my vitamin D levels were too.
I only recently added calcium and multivitamin supplements to my daily regimen and the lable indicates that it provides 100% of the RDA for vitamin D.
Thanks all for tolerating my relentless bitching about this.
Wolfie
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glad to hear no Lisfranc injury but what did the doc say about what you should be expecting for recovery time?
are you still unable to put weight on it?
still swollen?
no need to apologize.
i think i would be going a bit nuts (more nuts anyway) if i had to deal with this for that length of time!
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glad to hear no Lisfranc injury but what did the doc say about what you should be expecting for recovery time?
are you still unable to put weight on it?
still swollen?
no need to apologize.
i think i would be going a bit nuts (more nuts anyway) if i had to deal with this for that length of time!
Thanks Mitchy. I can walk on it, just not correctly. After about a 1/2 mile, my knees and hips ache from the incorrect way I'm walking. I can also expect my foot to be beet red and swollen to twice its size by the time I return home. The range of motion is great though as I can ride my bike for hours without issue.
The surgeon thinks that removing the plate will ease some of the pressure on the compressed nerve. Again, another comment about having skinny legs causing the nerve to already being close to the bone anyways.
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Thanks Mitchy. I can walk on it, just not correctly. After about a 1/2 mile, my knees and hips ache from the incorrect way I'm walking. I can also expect my foot to be beet red and swollen to twice its size by the time I return home. The range of motion is great though as I can ride my bike for hours without issue.
The surgeon thinks that removing the plate will ease some of the pressure on the compressed nerve. Again, another comment about having skinny legs causing the nerve to already being close to the bone anyways.
so, when does the plate get removed?
does he expect you to have a full recovery?
when?
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so, when does the plate get removed?
does he expect you to have a full recovery?
when?
He indicates that it's my choice when to have it done. I can have it removed immediately or wait indefinitely.
On a GREAT NOTE: I decided to return to work this weekend. I took a couple of pre-emptive pain pills and dealt with the horrid pain. I awoke the next morning sorer than hell and dreaded working that evening. A few hours into my shift, the pain was suddenly gone!!!! I have since been walking like crazy and I barely have a limp.
I hadn't completely realized how fucking depressed this entire episode made me. I was about to explode waiting on this to heal.
Now I can focus on finding the underlying causes of all the bone issues and balance/falling stuff.
On a somewhat funny note, I fell flat on my bony ass yesterday. I had been sprinkling talcum powder in my shoes and socks. As I stood up to put everything away and being shod in socks, it was like hitting a patch of black ice. :D Powder on hardwood floors is extremely slippery. I've been doing this for decades and never had this happen before.
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Are you sure this balance/falling stuff isn't attributed to something else
just sayin ::)
take care of yourself now :-[
HUGS
DEN :D
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Are you sure this balance/falling stuff isn't attributed to something else
(http://i255.photobucket.com/albums/hh134/bjz0819/box.jpg)
Glad your up and around Wolfter!
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(http://i255.photobucket.com/albums/hh134/bjz0819/box.jpg)
Glad your up and around Wolfter!
Thanks buddy! I took a nice long walk today...in the rain no less.
Did I ever share my wine snob friends story? Oh well, will share it again. We had friends who always brought their own wine because they didn't like my cheap white zin or my boxed wine. After one of their visits, I saved the bottle and filled it boxed wine. A few nights later, I presented like I was uncorking an expensive bottle of their wine.
As we sat there enjoying it, Andy commented "Now isn't this much better than that cheap shit"? I agreed and smiled broadly the rest of the evening.
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Talc on the dance floor, bottle of poppers screwed into each nostril, paaaaaaarrrrrrty.
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I had a major observation this morning that might shed some light on the balance/falling issues. It happened again this morning after walking a few step to the restroom. I noticed that I kinda went dizzy and blank for a brief moment before it happened. Luckily, I was able to catch myself using the counter as balance.
I've recalled that on each occasion that I fell, I had just stood up. I guess I never considered that I may still be having heart issues. I've not discussed this with my cardiologist yet, but think it might be worth exploring further. It might be possible that I'm experiencing sudden drops in blood pressure. In the meantime, I'll be standing up slower.
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You definately want to get this checked out.
Sounds like postural hypotension.
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You definately want to get this checked out.
Sounds like postural hypotension.
Thanks, I definitely will. I had severe hypotension in highschool and thought I had pretty much normaled out. If I remember correctly, during that period I had one BP reading that was around 70/30. Don't know why I didn't think of this possible connection before.
I don't think I've ever had a normal EKG in my life.
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Well, I've finally decided to have the plate and screws removed. I just don't see my walking/running abilities getting better. Might as well have it done while we have crappy weather. My pre-op appointment is April 2nd.
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Well, I've finally decided to have the plate and screws removed. I just don't see my walking/running abilities getting better. Might as well have it done while we have crappy weather. My pre-op appointment is April 2nd.
Wow ... I had a little sympathy pain for you when I read this . Mr Wolfe , you are one determinded brave man and my hat is off to you . Should I wish you luck or say break a leg ? . I'm going to go with best of luck .
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Wow ... I had a little sympathy pain for you when I read this . Mr Wolfe , you are one determinded brave man and my hat is off to you . Should I wish you luck or say break a leg ? . I'm going to go with best of luck .
I'm surprised I'm still getting responses as I'd have thought people were tired of hearing about this. ;D I was loosing the mental battle for a while, but have become a determined individual again. That's a different subject though...even though I have a couple of threads going.
There are a whole lot of positive changes going on. Some difficult, some easy. I've decided to once again take charge and be in charge. I've been agonizing over quite a few issues and have made stedfast decisions. Haven't necesarily made others happy...but my PMA is back. I'll make another thread someday soon...I hope.
Thanks buddy!
Greg
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My doctor finally ordered a Dexascan and I have an appointment next Tuesday. He also ordered additional labs to check my calcium and Vit D levels. I postponed the removal of the plates and screws until later in the Winter. I decided I'd rather walk with a bit of a limp over the Summer rather than being laid up again.
Being confined for long just about sent me over the edge. It was taking a bigger mental toll on me than I realized. So I'll enjoy what mobility I have for now.
The only issue I am still having is the possibility of getting an infection as the screw heads are rubbing through and causing sores. It limits what foot attire I can wear. Certain shoes causes more rubbing on the screw heads.
Wolfie
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Well, I thought I had another issue yesterday. A couple of weeks ago, an idiot at the post tripped me and caused my ankle to twist. I had to just sit there for a couple of hours as it swelled and hurt like hell. I was furious with him and called him every name that existed. What kinda fucking idiot trips someone as a "joke", especially someone just recovering from a severe injury?
So I was back to having a noticeable limp that continued off and on since. Yesterday morning at work, I was simply walking and my ankle twisted and I was fortunate enough to be able to catch myself by grabbing onto the bar.
I was able to "walk if off" somewhat but it continued to ache like hell. By the time I got home, it was swollen worse than when the original incident happened. The pain and swelling was so bad that I considered the ER. Instead, I prepared an icepack and got out my hoard of pain pills that I've saved for my future episodes (this qualified) ;D Took a few of them and slept great with my icepack wrapped around my foot.
Now the weirdest and probably the best news; when I awoke this morning, the pain is completely gone. First time ever. And the foot is 100% its normal size. Again, first time ever. I have a lot of numbness still but am hoping that's just the ice treatment.
I kinda wonder if something didn't finally break free?
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Geez Wolfie! I think you need wear this.
(http://i1047.photobucket.com/albums/b475/tradeinindia/IR80515KnightSuitOfArmour.jpg) (http://media.photobucket.com/user/tradeinindia/media/IR80515KnightSuitOfArmour.jpg.html)
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That's better than the bubble wrap ideas that all my FB friends suggest.
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That's better than the bubble wrap ideas that all my FB friends suggest.
LOL!
Notice that there still is an unprotected um....area.
Still gotta be careful. ;)
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LOL!
Notice that there still is an unprotected um....area.
Still gotta be careful. ;)
Unfortunately, I left that area unprotected a LONG time ago. :)
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I oh so know you all enjoy my misadventures so I thought I'd share my latest one. Thinking of getting a little pull behind wagon instead of actually carrying things. My coordination has went to total crap.
Thankfully, I believe my glasses actually stopped this latest event from being worse.
(http://i940.photobucket.com/albums/ad246/wolfter/badeye1_zps137e2ace.jpg)
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((((Wolfter)))
Hope you feel better soon!
britchick x
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Sorry in advance but you do look like a shifty eyed criminal in that pic. ;D
Get better soon! :)
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Hi Wolfie I would off added my observations earlier but was away far from easy web access.
Bone pain was the first problem I had with being positive. To cut a long story short I had a bone density scan around about 1993, and was diagnosed with osteophorosis. Far more advanced than what was expected in a mid 30,s man. I do have a skinny skeleton but still it was felt that the results where extreme , so it was notched up to one off my own reactions to being positive.
What we did not know at the time was I would be diagnosed with Hodgkins Lynphoma within the year.
The Bone scan approx 3 years later showed further derteriation. Ditto when the second round off chemo happened 10 years later.
Lost count off the fractures in toes/ fingers and palm off hands. Extreme low blood pressure another gift after the second batch off chemo and the my crazy neuropathy make Londons irregular paving stones treachourous.
6 years ago hospitalize with pcp i collapsed in the shpwer shattering length ways and crossways my ankle area , and have 3 pins in the area now helping the healing off the bone and making the foot look very differant to its twin.. Can be an area off Pain in the winter.
As low B/P is still an intermitant problem and I was always given to being a clumsy clot I now use a stick if the day indicates its use and/or my confidence levels are low.
I now take calcium D3 chewable 1000mg a day
Protelous 2grams mixed with water per day
The protelos replaced the usual treatment as that causes in a few cases the Jaw bone to die . This makes even a clean a right old palavour as its vital not to get any secondary infection in the jaw bone. Ones teeth drop out and break with alarming frequency too.
The dietatician commented that my childhood and adulthood diet was excellent. I do find it hard to eat when stressed.
Hope this can in some way be useful . I will try to answer any further questions you have.
michael
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Thanks Michael. I have another thread (or perhaps here) about my recent bone density test. It showed that I also have low levels for my age. I started the Sally Field treatment. ;D
Even before my malicious injury, I was having issues with that leg only. I didn't even bother to post here that I had another failure of that foot about a week ago. It still acts like it's asleep but without any sensation at all.
I have already had an idea in the back of mind as I developed another symptom a while back. My right hand has also started loosing feeling but it trembles when that happens. I've had several people comment on it.
I do know that I've had some weirdness going on for a few years now that didn't have anything to do with other complications. I guess time will tell.
Thanks again,
Wolfie
((((Wolfter)))
Hope you feel better soon!
britchick x
Thanks, I appreciate it.
Sorry in advance but you do look like a shifty eyed criminal in that pic. ;D
Get better soon! :)
I think I had already taken some of my emergency stash. ;D Believe it or not, it was a little bit painful. ;D
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Hi Wolfie
Well know I know lots about Sally Field.
Also clicked on to "food that strengthens bone" and again it described my diet apart from nuts & seeds which for some reason are v.expensive in UK.
At the moment I am looking , 99% sure , at moving in London from a Ground floor flat to a flat that's got 3 sets off steps and stairs , I am aware that there have been times when I would not off considered the steps but am hoping that they will do me good and it will be some time off when they are a problem. Though am anxious about it.
Best wishes
michael
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Wolfie, have you been checked out for Parkinson's? Some of the details you provided in your last post reminded me of a man I know who was eventually diagnosed with Parkinson's. It wouldn't hurt to have your doctor rule it out as a possible cause. You're pretty much the right age for early symptoms to be appearing.
In any case, I hope you heal quickly and feel better soon.
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thanks for the input, I've already discussed all this with my dr. I recognized the secondary symptoms. There's no specific test and we're trying to eliminate things
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Another potential thing you could do is some resistance training/weight lifting. No need to go overboard, but even some moderate excersize of that nature can help improve bone strength. I have read where older women managed to gain significant bone density that way.
Talk to your doctor to see what they think . . .
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There's no specific test and we're trying to eliminate things
True, and I can well imagine how frustrating that can be. The person I spoke of earlier (he's only an acquaintance of mine, but a family member of a friend) went for several years before getting a diagnosis. In the end he was given a drug used to treat Parkinson's and when that relieved his symptoms, they called it a diagnosis.
On a side note, that's why they still call it the practice of medicine. They keep having to practice until they (hopefully) get it right.
Hope you get to the bottom of this sooner rather than later. Not knowing is always the worst, eh? Hang in there.
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I think part of the problem is that there are a couple of different issues going on. Obviously, the easily fractured bones and bone loss. But I started discussing the balance/falling issues quite a while ago. Escalators have been a source of anxiety for a while also.
My doc did suggest we try an anti-pd medication, but also indicates that we should see if the symptoms progress. I go decent amounts of time between incidents and that why we're hopeful it's not pd.
These symptoms all manifested after recovering from the Cyrptococcal Meningitis so the doc feels a lot of this can be explained by neurological damage done during that period. Mine was pretty severe which led to a bout of blindness/deafness. The swelling was bad enough that they considered drilling for oil :D to relieve pressure.
A lot of this is a result of my own idiotic decisions during a dark period and I guess I continue to reap what I sowed.
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Another potential thing you could do is some resistance training/weight lifting. No need to go overboard, but even some moderate excersize of that nature can help improve bone strength. I have read where older women managed to gain significant bone density that way.
Talk to your doctor to see what they think . . .
I don't do strength training but I perform a lot of manual tasks. I do a lot of cardio exercises as I'm an avid cyclist.
I don't have any published reports to support my doctor's assertion, but he is seeing a huge increase in the number of long termers who are experiencing bone loss. He had a conversation with a colleague of his who now routinely performs BDS on all his older patients. He is concerned about the higher than average bone loss in this segment.
I guess we continue to be the guinea pigs for the advancement of living with this virus. ;) We were the chosen ones, stricken in the mid 80's, barely out of highschool. :(
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I guess it's too funny not to share; I stubbed my little toe yesterday evening and you can guess the result. Multi colored and almost as big as the large toe.
No sense bothering with having it checked as they can't do anything anyways. Been there done that before.
At least I have an excuse to deny my services when asked.
Wolfie