Having Wicked Trouble With My Legs Today!

[jonathanireland]

Hey everyone so today my legs are so so painful its like really bad growing pains or somthing, its pain all over but it feels like its coming from deep inside my legs i have experienced this a couple times before.

Please post your ideas on this some help would be great. lucky I have my wheelchair lol

[peppermint patty]

Hi! I get this too. You described it perfectly. I have no idea what it is, but it seems to be happening more and more to me. I know its not growing pains (LOL). I am 50. I try rubbing my legs (doesn't seem to help so much). It just goes away on its own. I am going to mention it to my doctor next visit. Wish I could be of more help. Hope you are feeling better. Take care...

[jonathanireland]

awh thanks patty thats really nice of you thanks for your reply,

If you could maybe let me know what he says as we dont have autonomic doctors over here my own doctor wouldnt probably give an opinion on it being related to POTS as he wouldnt know him self if it was or not,

Thanks again for ur reply

[Sarah4444]

I get pain like that in my legs too - it comes and goes and I can't predict it. The closest I can come to figuring out what is causing it is MCAD - when I read the symptoms of mast cell disorders on the Mastocytosis Society web page I found I had about 95% of them. One symptom they list is bone pain, and that is the closest description I can find for my leg pain. I also get joint pain in my back, knees and hips and also inflammatory pain, but the achy leg pain is different. I have just started to try the MCAD medications to see if they help. Good luck.

[Heiferly]

Sarah,

Have you gotten any info from your docs on your joint pain? I've had terrible joint pain in my knees and hips that emerged this year (never had this problem in former years of having dysauto), but my docs haven't been very helpful in figuring out the problem. I suspect it could be vascular (perhaps too much localized clampdown, maybe even worsened by the Midodrine? I know peripheral clampdown can occur as a response to the thoracic hypovolemia but am not 100% certain this could be affecting my joints), but my general practitioner doesn't seem convinced and I think she's the one who I would need to get a referral to a vascular specialist. (My cardiologist agreed more with my assessment, so I may try asking him for the referral.) They did x-rays but that didn't show anything, and they also ran blood tests looking for rheumatoid factors, some type of autoimmune marker (?), and whatever other ideas my general practitioner came up with but this GP is new to my case (my last one left the practice--ugh) and I think she's just looking for "normal" things.

Is your joint pain worse when your joints are bent? I feel like mine is worse when mine are bent and will alleviate somewhat if I straighten my joints out fully (which obviously isn't practical all the time). Does any medication or anything else help? They suggested I try something anti-inflammatory like Aleve, but it did nothing. I tried pain killers like Tramadol and even Vicodin, but that didn't help either. I wish I knew what the problem is.

[Sarah4444]

Hi Heiferly-

My joint pain has always been blamed on mechanical causes - I have injured both my back and knees in accidents, so my doctor has just assumed that is what caused the ongoing pain. However, now I am wondering if the pain is part of the dysautonomia, at least to some extent. I was just officially diagnosed with POTS two days ago, but after strange symptoms I have had for decades, figured out for myself that I had it in the spring. My family doctor doesn't know much about it and hasn't sent me for any tests - he will order bloodwork or make referrals if I ask, but doesn't take any initiative to help me figure any of this out. I think he is waiting for specialists to give him instructions and guidance. I just don't know enough about POTS to know what to request in terms of tests, etc. Sorry I can't be of more help, but let's keep in touch in case one of us has some luck with this. I am actually on my way to Baltimore to see a connective tissue disorder specialist, so I'll be offline this week.

[tinkerbella]

Hi, I know this pain all too well... I was told to get quinine water and drink it. I found they don't sell it full strength, but it's in soda water and I bought a bottle of lime to try. I noticed it was in the back of my fridge tonight. Wish I had pulled it out as I'm really hurting bad and can't go over the stairs one more time. I will mention it to my Mast cell doctor as she is watching me for lymphoma and leukemia as my something is really high. The pain is unbearable. Nothing touches it. Tomorrow I'll try the tonic water and see how it works.

xxxx's

BellaMia~

[runningshoe]

I posted about pain last year - it was like a deep deep pain in my arms and back mostly. Seems like others had it as well. Poor circulation might lead to lack of nutrients getting to all the parts of our body ...maybe causing this? Could it be fibromyalgia? I have lyme so I think that is part of the problem for me. Hang in there.

[tinkerbella]

Tonic water worked like a charm last night.

bellamia~

[delphicdragon]

I'd recommend getting your Vitamin D levels checked. My very low levels caused severe leg pain which resolved after taking 5000IU/ day for about a month. Just a thought.

Sara

[comfortzone]

I have leg pains too -- also had 'em as a kid (growing pains) --- I have EDS ... and in having that -- lots of odd pains and sensations in the limbs are pretty normal daily occurences... I just never knew that until recently when I saw an EDS doctor. Are you hypermobile? Anyway now I get burny leg pains... sometimes it's really bad behind knees and feet... guess thats small fiber neuropathy and perhaps something to do with all the odd sensations hypermobility offers d/t varying reasons like our vasculature and other things....

Dunno why some days are better or worse than others -- but it's definitely the case for me --- tonights treatment is half a box of Nilla Vanilla Wafer cookies (the lowfat kind)... NOT to be tried by anyone unless they r thin and need to bulk up the carbs lol...

[crowebirds]

I have never been diagnosed with anything though I do have or have had a lot of the same symptoms as my daughter who has DYS. She and I both have the sensation you are describing. I get it in the long bones and on occassion in the ankles and hips. I can get the pain after being exposed to the a/c too long. Even though I don't necessarily get cold, I usually tell people that my bones are cold. It was bad enough to keep me from going to sleep at night. Doctors always said that it was growing pains. Well, at 40, I think I am done growing. The best treatment I have found is sitting in a hot bath.

[Elfie]

I have had severe joint and bone pain in the past. Docs at Mayo (AZ) told me that it was nervous system related, similar to fibro (not muscle pain, no trigger points)-- but not. They said that it was probably related to the POTS as a rare complication of dysautonomia can be joint/bone pain. Some docs will disagree with this though, but they attributed mine to a misfiring of my nervous system.

[jonathanireland]

Thanks everyone for the messages its great getting everyones opinion on all these different aspects of dysautomnia.

Iv only ever ben diagnosed with pots they have never checked for a cause or even asked about my symptoms to see what kind of pots i have just diagnosed and let home from the hospital with a beta blocker, now i use a wheelchair.

Medical Care here in Ireland is free absolutely free but! its shite (ooops i dunno if im allowed say that here)but really though it is when it comes to things they dont understand or arnt familiar with, they disregarde this and label you with a mental diagnosis here like my previous diagnosis of speudoseizures (ya right a mental seizure at 13 in fairness i was only a baby) and chornic anxiety come on yet again i was only 13 and happy as larry.

Anyways its great to have such a tight community of vertual friends forgive me if some of my spelling is wrong i type pretty fast im told and im always making mistakes but couldnt be bother fixing them all lol mwahahah jokes

[tinkerbella]

My leg pain is so bad that I've decided I would need to drink tonic water all day long..My PT has me flexing my feet in bed to increase circulation of the blood along with stretches to loosen up all those tight muscles as well.

It does feel like something is eating away at my leg bones and none of my meds cover the pains completely. I'll have to get more tonic water at the store next week and down a bottle at bedtime as that is when the pain seems to be the worse.. I found this blog about pain and foods you can eat to help along with fish oil. A friend of mine is a midwife and this lead me to another persons blog who's a midwife but had a post on natural ways to make pain go away.

http://birthfaith.blogspot.com/2010/02/pain-pain-go-away.html

It was funny as my doctor just added fish oil to my list for lowering trig, as I'm allergic to statins and get that muscle wasting condition. Hope passing this on helps at least someone.

xxxxx's all around ~ *

bellamia~*