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Bone Pain..


dizzygirl
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hey all...

I know i ve folked about t his on here till the cows come home all old and grey.. but OMG!! to date nobody seems to be able to figure it what is causing it...

Its really effecting my hips and my spine.. the past few weeks have ben rough pain wise...and the bone pain in my legs is just unreal....its in my feet too..

i can not get relief from it in my right hip or leg no matter if i am sitting laying or standing or try stretching..

my fatigue has been more profound.. kind makes ense though b/c the body is in increased stress mode.. due to pain...

potsy symtoms are generally in more of an uproar..

anybody got any idea's of what causes such apin?? I mean my bones just feel like thye are going to shatter in a million pieces... from my skull all the way to my toes..... and there isnsharp sharp pain that run thru my legs at night when im trying to sleep...

ive tried doing an internet search and dont really come up with anything..

thanks all for listening to me babble about my legg pain bone pain yet again..

dizz

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Hi,

I'm sorry to hear you're feeling so badly :unsure:

I know bone pain can be symptom of lyme disease. I used to have a lot of pain throughout my spine and neck - not fun! Taking epsom salt baths used to help me with the pain somewhat. That and lots of pain relievers....plaquenil was probably the most helpful.

I hope you are able to figure out the cause, and that you feel better soon.

Pam

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nope no steroids or florinef..

I have had this bone pain since i was (thatt i remmeber) 11-12 yrs old.. so like 13+ years.. my parents tell me that i had it younger..then that..

as i have hit 22-23-24 the pain has gotten consdierably worse.. i ve tired narcotic pain meds up the wazoo.. and muscle relaxers.. PT.. tenz units.. all sorts of things

I ve been tested up he wazoo as well.. everything comes back negative..

I feel like im at a point of desperation.. as ive gotten to the point where the pain is there like all the time.. to one degree or another... but it salways there..

((((((((((((((((((((sigh))))))))))))))))))at this point i just want relief.. it would be nice to know what it is.. but if i can find relief i would be ahpppy with that

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Guest tearose

What position can you rest in? When my lower back and hips are hurting I try to wedge pillows under my hips and rest my spine in between...it brings some relief.

Also, how old is your mattress?

Could you put a 2" foam topper on it and see if the hip bone pain is relieved?

sorry you are having this pain.

pain is so draining.

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hi tea..

my mattress is new actually just got a few months ago.. we cushioned it up with blankets.. and a mattress topper..

and i just got a really really nice pillow for christmas that sems to help support my neck a bit more..

I want to get on of those down mattress pads..

next step is wedge pillows... and stuff..

(((((((((BIG SIGH)))))))))))))))) pain is quite draining! whewwww! no wonder all i want to do is sleep sleep sleep!

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Please don't give up, even after all this time.

If you can possibly read, get Pain Free in 6 Weeks, by Sherry Rogers, M.D. She had all sorts of pain, terrible back injuries, etc. She could write herself any prescription she wanted, which she did. Nothing worked in the long run.

Then she started learning about pain chemistry, inflammation, healing, etc. She is now pain free and wrote this book for people like you. I have recommended it for years and know some people who felt hopeless until trying her recommendations. You do what you can, what you can afford, one thing at a time, until you get the right combo for you.

I am so very sorry you are suffering so much.

OLL

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Hey Dizz.......

I can really relate to the pain you are going through. I have been battling with severe pain in my legs, hips, back, neck for the past year when my symptoms went haywire on me.

Unfortunately, my doctor just writes it off to fibromyalgia, and hands me my vicodin prescription with refills. It's getting to the point, where my body has worked up a tolerance to taking 10/1000 mg every 3 to 4 hours of vicodin, and the pain still persists. This has been such a great source of frustration since, the pain and lack of being able to properly sleep and get comfortable makes me so cranky! I'm seriously considering looking at ordering oxycontin over the internet, to see if that will help any.

I've tried the neuro pain killers, which helped with some of the burning sensations I had in my feet, but the bone crushing pain throughout my body wasn't touched or relieved.

If you are able to get some relief, please let me know, as I'm also desperate for a reduction in pain. The only time I'm able to get any rest is when I take an extra vicodin and lay down and sleep out of pure exhaustion! I didn't find stuffing pillows beneficial for me, but maybe they will benefit you some.

Hope you find some comfort soon!

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I was going to suggest that you look into fibromyalgia or CFS, as both often overlap with POTS and cause significant pain. Another thing to look into is Ehlers-Danlos Syndrome (EDS) as that often overlaps with POTS, too. Hip and back problems are prevelant with that. A good orthopedic doc should be able to access you for hypermobility, etc.

I've also had that pain on the bottom of my feet that is incapacitating. It tends to signal a dysautonomia flare for me. I've always been able to work through those stretches (that sometimes last a month or so) by trying to get extra sleep, eating carefully, hydrating alot. The pain eventually passes for me and I improve.

I pray things get better for you soon.

Hugs-

Julie

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Interesting... I was thinking Fibromyalgia, too. I've had this since I was 17 (1992), and it was at the time about as unknown as POTS is today. Just last year I found a new rheumatologist at UConn who talked me into trying Cymbalta (I had been on so many SSRIs with awful side effects that I was stubborn about taking any kind of reuptake inhibitor - Cymbalta is an SNRI). It turned out to be my miracle drug for fibro. I had been on and off every drug known to man for over a decade, and this one actually worked. There is some minor pain still - about a level 3 or 4 - but it's not even noticable compared to the level 7 and 8 pain I had previously.

My pain from fibro feels bone deep (it comes back if I miss the Cymbalta for a day or two). My legs and arms just ache way deep down. My shoulders, neck, and between my shoulder blades scream with pain, as well as my hips, and lower back, with immobilizing, shooting pain that travels from the hips and down the legs. I had very bad "growing pains" and back spasms when I was younger, too; it just hadn't fully developed into the beast it would become. :rolleyes:

Dizz, Has anyone tested you for the pressure points that are used to diagnose fibromyalgia? I hope the pain goes away for you soon. It is so all consuming - energy, mind, body, quality of life.

As a layman, I can associate "bone pain" with fibro because I've felt it, but that's not typically the descriptors a doctor would listen for as a diagnostic trigger. The slightest change in verbiage seems to pique a doctor's interest and send them searching in a specific direction. I'm just wondering if yours might be looking the wrong way!

(Babs, has your doctor tried Cymbalta or Lyrica? Research is showing huge improvements in fibromyalgia pain, which shows that it may be correlated to the nervous system - neuropathic pain. Are these the neuro pain killers you were referring to?)

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Interesting... I was thinking Fibromyalgia, too. I've had this since I was 17 (1992), and it was at the time about as unknown as POTS is today. Just last year I found a new rheumatologist at UConn who talked me into trying Cymbalta (I had been on so many SSRIs with awful side effects that I was stubborn about taking any kind of reuptake inhibitor - Cymbalta is an SNRI). It turned out to be my miracle drug for fibro. I had been on and off every drug known to man for over a decade, and this one actually worked. There is some minor pain still - about a level 3 or 4 - but it's not even noticable compared to the level 7 and 8 pain I had previously.

My pain from fibro feels bone deep (it comes back if I miss the Cymbalta for a day or two). My legs and arms just ache way deep down. My shoulders, neck, and between my shoulder blades scream with pain, as well as my hips, and lower back, with immobilizing, shooting pain that travels from the hips and down the legs. I had very bad "growing pains" and back spasms when I was younger, too; it just hadn't fully developed into the beast it would become. :rolleyes:

Dizz, Has anyone tested you for the pressure points that are used to diagnose fibromyalgia? I hope the pain goes away for you soon. It is so all consuming - energy, mind, body, quality of life.

As a layman, I can associate "bone pain" with fibro because I've felt it, but that's not typically the descriptors a doctor would listen for as a diagnostic trigger. The slightest change in verbiage seems to pique a doctor's interest and send them searching in a specific direction. I'm just wondering if yours might be looking the wrong way!

(Babs, has your doctor tried Cymbalta or Lyrica? Research is showing huge improvements in fibromyalgia pain, which shows that it may be correlated to the nervous system - neuropathic pain. Are these the neuro pain killers you were referring to?)

Deucy -

My doctor put me on Lyrica a short while ago, but no such relief. There was relief for the burning sensation in my feet, but not the rest of the deep down pain I have 24/7. Yes, it was what I was referring too, when I mentioned the neuro pain meds. I'll have to bring up the cymbalta to my doctor and see if it's worth trying. I found that the Lyrica made me dizzy, so he pulled me off it.

Thanks for throwing that out there, as it never hurts to try alternative meds in order to find one that works. Funny how meds work for some, and not for all........

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um fibromylagia has been ruled out.. my ans specialist told me that the type of pain that i am having is unrelated to fibromyalgia or pots.. but is something else going on.. but again we havent yet figured out what that something else is..

I have tried cymbalta and lyrica.. im allergic to lyrica.. and cymbalta i was on for some time.. it brought a small small amount of relief.. but as time wore on i had to decrease my dose of cymbalta (it lost its affect at low doses).. b/c i wasnt tolerating the drug well.. side effects far out weighed the benefits..

I do just deal with the pain.. but some days i cant .. its to overwhelming.. and nobody should just have to deal its inhuman!

thanks all for suggestions and support...means alot :0)

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How are you sleeping? Sleep quality is my current favorite topic because my husband is doing so well after 6 months of CPAP therapy (for obstructive sleep apnea). Here is a link to an article on pain and a few quotes discussing the tie to sleep quality. The sleep study found that my husband was never getting to stage III and IV sleep due to numerous undetectable muscle twitches (165 over the 7 hour test). Looks like the question on pain and sleep deprivation is similar to the chicken & the egg - "which comes first?"

Just an idea since nothing has yet worked for you - all we can do is share our experiences and hope that something works for someone else in the group.

Evolving Changes in the Chronic Pain Paradigm CME/CE

September 7, 2006; 1:00 PM

Presenters: Lynn R. Webster, MD, FACPM, FASAM, and Richard Payne, MD

http://www.medscape.com/viewprogram/5880

Sleep Stages and Function

Humans experience 2 main types of sleep, REM [rapid eye movement] sleep and non-REM sleep. REM sleep can be subdivided into phasic and tonic stages. REM sleep is also referred to as paradoxical sleep because the sleeper is difficult to arouse despite having an EEG [electroencephalogram] that is characteristic of an alert awake state. Non-REM or slow-wave sleep is characterized by 4 main stages ranging from light sleep in stages I and II to deep sleep in stages III and IV. As we know, a majority of chronic pain patients report sleep difficulties. Many patients fail to achieve restorative sleep because they do not experience sufficient non-REM stage III and IV sleep. Failure to achieve sufficient restorative sleep can contribute to multiple long-term comorbid conditions, including fatigue and metabolic disorders. There are also reports that inadequate restorative sleep can decrease tolerance to pain.

Most chronic pain patients report difficulties sleeping resulting in sleep deprivation. Many of these patients do not obtain restorative (sleep stages III and IV). As a result, patients who are sleep-deprived are known to have the following: impaired cognitive functioning, negative quality of life, increased risk of psychiatric disorders, increased incidents of bodily pain and poor general health, decreased job performance and increased absenteeism, increased risks of accidents, and increased healthcare costs.

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I'm on Neurontin 300mg x2 (so 600mg) twice a day (1200mg for the day). It helps with the pain a little. Also, when it's unbearable, especially in my neck,arms and shoulders, I have oxycontin or avinza to take--I hate them both b/c they make me so darned hyper with my thoughts racing and unable to sleep--so it's a trade off. Either I try to sleep with the pain, or go sleepless without pain. ;) whatever. I haven't filled the avinza script yet because I just have a mental block about using another heavy hitter pain killer.

If you haven't done so already, a pain management consult may be of use. Nina

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  • 2 weeks later...

I have tried various meds for pain, I have leg pain never explained although had many test, and i wondered if it was poor circulation. However, docs seem to give up and prescribe me tooo many pain meds. Although over the last few wks i have had to take morphine at night, didnt help, and durin the day i am on Lortab10, which eases it some, but i am having headaches although i think it is the florinef, never had headaches before. I tried soaking, and ibuprofen, etc. I am still hurtin, i feel like a old woman when i get up out of a chair grabbing back, etc. It is frustrating, and then there is the nausea, oh yukkk!! I hope someone can finally understand, by reading seems most of us have pains they say isnt relevant to pots, etc, but it sure is strange that most have the same type pains, go figure,lol

Hope all is well

Donna

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DIZZYGIRL,

I don't know how helpful this information mat be to you but I felt that I needed to post it for you. I have had psoriatic arthritis (one of MANY autoimmune diseases that can possibly cause things like POTS) and after reading your post about your pain, I really wanted to share some info with you.

Psoriatic arthritis CAN be associated woth psoriasis but NOT ALWAYS. As a matter of fact there can be many skin conditions like small bumps that look like bug bites, a history of cellulitis, and even hidradenitis that can be related to this. This is a rarer form of autoimmune arthritis and many docs don't think about it. It can be associated with bone and joint pain, and even bone and joint inflammation. Many times xrays won't even show anything yet the pain is so severe.

So, anyway....here is a link I thought you might want to read. It may not pertain to you at all, but sometimes looking outside the box can help us find answers and it certainly sounds like you are deperate for some right now.......

ps. you don't have to have joint inflammation or deformity to have one of these disorders!!!

http://www.emedicinehealth.com/script/main...f=3&page=18

Hope this info helps you!

Eliza

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