Super Pain. Joints. Feet. Anyone Have?

[Kitsakatsa]

Does anyone have this?

When I stand up after sitting even a couple minutes, my joints are in extreme pain.

They are super stiff and I even lose power in my muscles while going down stairs sometimes.

The joints hurt to the point of an inability to move after a while they seem to warm up.

When I run errands, my hips hurt like they are held on by safety pins or something. My feet just absolutely kill. They are painful when I get up from sitting and then even worsen. I can't count the times I've found myself walking in the parking lot walking slower than the oldies in the walkers. It takes me forever to grocery shop. I used to be this super nimble dancer 10 years ago and now here I am walking all stick legged and slow.

This has really popped up in the last 3 months, so it seems that it has been sudden. One day I was fine and the next day, Bam.

I am starting to feel so old!

Does anyone have an idea of what this could be? It has been helped by Celebrex a little bit but the stiffness is still there.

Kits

[Kitsakatsa]

Oh also, do you want to hear something wierd?

After just a few minutes, the vibration of the car on my feet becomes so dang painful!!!

Have you ever put your feet in ice water? It is that grade of pain.

I went to a foot doctor, but he just said "here's some arch supports and my bill for $200".

I am not a complainer, but I just really think that something is horribly wrong.

I just don't know what.

Kits

[issie]

OH YEAH!!!!!! I stand, hold my breath ......... wait ........hold my breath ......... breathe, try to walk. Same with my hands and fingers. I have been diagnosised with osteoarthritis and fibromyligia and Ehlers Danlos. So take your pick. Not sure if this is it, but probably a combination one of the three is.

Sorry you have it too. I'm trying Turmeric and Ginger as anti inflamatories to help. Seems to help some. Just remember with ginger, it thins your blood and you must stop it in advance of surgeries. The other thing is homeopathy.

[kayjay]

I have similar pain. My hands hurt more than my feet. My feet will hurt from standing. I do not have arthritis. I was told that it is fibromyalgia. I explained to my doctor that I feel as if I was tumbled dry in the dryer... just all beat up. My hands hurt so much I once had a dream that i was a piano composer and I was banging on the key board.

I also have the muscle weakness esp with the with stairs but I think it is from the pots.

Lyrica helped me with the pain. Cymbalta helps somewhat. I went off of gluten and found after a few months my pain was better. Yesterday I ate pasta at lunch and now my hands, feet, elbows, knees, shoulders are really hurting.

My feet used to hurt so much I thought that it was from the tile floor in out house. Now I wear rocker-bottom shoes in the house and sometime fit-flops. I always wear rocker bottom shoes if I have to shop - now at least they are less geeky.

Don't give up. I now am having more days with less pain but it took a lot of trial and error to even figure out what might help. I still have pain but it is less intense and less frequent.

If your joints are swollen I would follow up with a doc. Mine are not. All of my pain seems to be nerve pain. Good luck to you.

Also I forgot to add that when I can I do an easy yoga dvd. I will start in a lot of pain but it seems to give me relief when I am done.

[potsgirl]

I also have a lot of pain in my hands, feet, elbows, knees...to the point where I have a hard time holding a coffee mug. Fibromyalgia comes to mind first, since that's often associated with POTS, along with Chronic Fatigue Syndrome. My internist thinks I have something called "Complex Regional Pain Syndrome" which is a nerve issue and is also connected to autonomic nervous system function - or dysfunction! It can occur from an injury, cerebral lesions (which I have), ischemic heart disease (which I also have), surgery, or the cause can be unknown. I wrote a thread about it still on the forum under the name of the syndrome.

I would definitely get these things checked out, because it sounds like there definitely is something going on, even if it's osteo or rheumatoid arthritis - especially since you were a dancer previously. Lyrica didn't help me, so I'm just starting a dose of Neurontin. Juries still out on that one.

Good luck getting to the bottom of this, and hope you get relief soon. Let us know....

Jana

[pat57]

Have you read up on Rheumatoid arthritis? I believe it effects all joints and is symmetrical.

The feet do have alot of joints.

if you find that it does sound like you, keep in mind that remission is not unusual.

i say that because I feel like the thought of RA is upsetting, and I hope you find

no similarities .

[toddm1960]

I know just what you mean, all of my joints scream at me in the morning, after sitting, it's crazy. Mine has gone on for 5 years now, my line to the doctrs is I feel like I'm 80 years old. Strange points of pain in the last three knuckles of both feet and hands, very pin point sharp pain in those 6 joints.

[Kitsakatsa]

OH YEAH!!!!!! I stand, hold my breath ......... wait ........hold my breath ......... breathe, try to walk. Same with my hands and fingers. I have been diagnosised with osteoarthritis and fibromyligia and Ehlers Danlos. So take your pick. Not sure if this is it, but probably a combination one of the three is.

Sorry you have it too. I'm trying Turmeric and Ginger as anti inflamatories to help. Seems to help some. Just remember with ginger, it thins your blood and you must stop it in advance of surgeries. The other thing is homeopathy. When it's real bad, Tramadol and Bentyl.

Thank you. I do have Tramadol for menstrual cramps and that does help a little but I only get 10 pills per month (Utah is hyper crazy on poly pharmacy pain meds). With your Ehlers Danlos, did you feel that you were hypermobile before you were diagnosed?

Kits.

[Kitsakatsa]

I I explained to my doctor that I feel as if I was tumbled dry in the dryer... just all beat up. My hands hurt so much I once had a dream that i was a piano composer and I was banging on the key board.

Exactly! I just mentioned it to my doc- I only had 10 seconds because the visit was for dis paperwork but I described it like I feel I'm in a car crash when I get up. I try to be a pretty active person now that I'm not working and what you are saying above sounds exactly how I feel!

Kits

[Kitsakatsa]

I also have a lot of pain in my hands, feet, elbows, knees...to the point where I have a hard time holding a coffee mug. Fibromyalgia comes to mind first, since that's often associated with POTS, along with Chronic Fatigue Syndrome. My internist thinks I have something called "Complex Regional Pain Syndrome" which is a nerve issue and is also connected to autonomic nervous system function - or dysfunction! It can occur from an injury, cerebral lesions (which I have), ischemic heart disease (which I also have), surgery, or the cause can be unknown. I wrote a thread about it still on the forum under the name of the syndrome.

I would definitely get these things checked out, because it sounds like there definitely is something going on, even if it's osteo or rheumatoid arthritis - especially since you were a dancer previously. Lyrica didn't help me, so I'm just starting a dose of Neurontin. Juries still out on that one.

Good luck getting to the bottom of this, and hope you get relief soon. Let us know....

Jana

My word, you have a lot to deal with. I'm sorry about the Complex Regional Pain Syndrome. I know exactly what that is from my work in the OR and I am so sorry. That is not a fun ride. Thanks for replying.

Kits.

[Kitsakatsa]

Have you read up on Rheumatoid arthritis? I believe it effects all joints and is symmetrical.

The feet do have alot of joints.

if you find that it does sound like you, keep in mind that remission is not unusual.

i say that because I feel like the thought of RA is upsetting, and I hope you find

no similarities .

My doc did a lupus test (cluster of tests) and my RA factor was high and everything was positive for Lupus, but I feel better in the sun- so we don't know. I wonder about straight RA though. I'll read more on it. I just keep thinking that I don't want to pursue it because I am overweight and I think if I just lost weiht- but I've been overweight for 10 years now (thx to taking amitryptiline in my 20s for headaches) and this has been a very recent change. I'll read more.

Thanks for responding!

Kits

[Kitsakatsa]

I know just what you mean, all of my joints scream at me in the morning, after sitting, it's crazy. Mine has gone on for 5 years now, my line to the doctrs is I feel like I'm 80 years old. Strange points of pain in the last three knuckles of both feet and hands, very pin point sharp pain in those 6 joints.

That is how I feel. I have more dull pain- but I feel so old. I'm afraid to get on the Wii because it might give my flexibility age in the 100s! That is strange pain. Doesn't sound fun. Thanks for replying.

Kits

[potsgirl]

Kits,

If you know any more information about the syndrome, please let me know. You could write it here on the forum, or in a PM. It sounds like you've had experience with this, and anything you could tell me would be much appreciated. This seems to be moving awfully fast....First one hand, then the other, and then it's moved up to my shoulders. A couple of days ago my feet started with the hot periods and pain, which is now in my ankles and knees. I'm trying to move my specialist appointment up soon, since it sounds like the sooner you treat it, the better....What do you know?

Thanks so much,

J

[kayjay]

Ok I know I already told you what is helping but I forgot to add that swimming helps as much as yoga. No matter how crappy I feel I feel a little better after a swim. I also soak in epsom salts. I don't know if it is mental of not but an epsom bath seems to help me at bed time.

[juliegee]

This is weird, but YES, YES, YES. I used to experience so much pain that I felt 100 y/o. The bottoms of my feet would burn. The pain was unbearable. I would go to dinner with friends, sit for a few hours, and literally be unable to get up. The stiffness was incredible. It would take me several m-i-n-u-t-e-s. I pretended to look for something on my purse to justify my antics . Now for the weird part, the pain all went away since I've been on an MCAD regimen. GONE.

Seems like others are connecting the same dots. Check out this site: http://painmuse.org/?p=369#more-369

I'm just sharing my experience. My pain went from 10 (on a 1-10 scale) to a 2. I take strong doses of H-1, and H-2, and singulair. I think it's worth exploring.

Julie

[Nela]

Wow, you all feel it too? I have the same thing! I'm just 24 but oh my word is it painful to stand up after sitting Add the pain to the loss of balance and you just look completely silly to the people not understanding what is going on

[toddm1960]

Mack's Mom any guess as to why the H1 & H2 help with this? Do you think it would only help if you were having mast cell issues? It's worth a try I already take Allegra-D I'd love to reduce this even a small amount if I could. Thanks for the info.

[comfortzone]

Absolutely 100% yes! Mine started inbetween back to back knee replacement surgeries 2 years ago. I was peeling apples for a pie near Thanksgiving - 3 mos. after the first replacement and one month before the second - and my hand and arm started hurting....I freaked out because it made no sense at all - you don't get joint pain from peeling 6 apples.... Things got only worse. Suddenly every morning (& this persists to this day) became hellish. The moment I open my eyes I am aware of where all my joints are.......they are stiff beyond belie & sore and I have to manually move my arms about at first with my opposing arm. I teeter on my feet to the bathroom holding onto furniture and walls and window sills. My right elbow got so painful I had a cortisone shot in it to help. I started dropping things and couldn't hold a cup, pot or pan for a bit. My arms felt heavy as well. My right leg would buckle and I could only manage 3 to 4 hours of activity without being compelled to lie down. My toes at night felt like someone was biting them. None of it explainable.

Then one doc thought hypermobility syndrome & I got that confirmed at a university medical center. Still though even they said a lot of my story was a bit atypical. That is aka Ehlers-Danlos type 3 or the hypermobile type of EDS in some circles.

Well I tried going back to work part time and found often in spite of pain medication and rest - I could not keep up with the demands of the job and I got let go. I was pretty devastated. At that time an ortho doc thought maybe I had MS. I made the rounds of neurology, oncology, rheumatology, ortho etc...& got the mention of psychological causes only from a neuro. I was like - yeah right! Once when in a home for my job I remember checking my patients pulse-ox and I was sweating so terribly (I never did sweat in my life like I do now) that I checked my own pulse-ox - and my heart rate was 140 - from merely standing in someones living room. Whatever was going on wasn't letting up.

My right leg wouldn't go up a curb - till 6 months of physical therapy got me there - & even now I stare down a curb before I attempt it. My balance isn't normal at all - but I've only fallen twice - more related to my clumsiness than anything. Evidently the problem isn't with the joint replacements either because I had all the tests for that at a huge medical center.

Next came the radical shifts in blood pressure in a day - High most of the time and then out of the blue really low .... ??? Episodes of flushing, bounding heartbeat and heartrate........cardiology noted the lows in b/p came after standing periods of time. I took a new job where I stand four hours a day and then I must go home and lay down. I feel like crap for a couple of hours while laying down and then things seem to equilibrate - 'cept for the sensation that shark on gnawing on my toes. I get up and do a bit more in the evening - to hit the bed with the most persistant case of insomnia my doctor has ever seen.

Then once awake in the morning it begins again - the stiffness, the pain etc... Usually however after being awake for an hour or so - and moving despite how I feel about it - my symptoms improve greatly. It's like I go from 90 years old and crippled to a 70 year old for a bit and then finally I get to feeling almost normal (aside from heart palpitations and the flushing and sweating)....

One day a week or so ago I had the worst headache of my life - associated with a very high blood pressure again -- a head CT showed a lacunar infarct or stroke. My primary care didn't care to investigate further - so I went to my cardiologist who said he didn't necessarily believe the CT scan so he ordered a brain MRI....I believe that will be done this Thursday.

I found this website and it has been a real Godsend ~ I will give a last try and trying to have someone explain this crazy life I now live........maybe I did have a stroke? If I did maybe I got some sort of pain syndrome from it? Or not........dunno...........

Anyway - just another person's story for you to read - Bless you!

[ramakentesh]

I have ankylosing spondylitis and POTS (got them both together) and I get random joint pains in various parts of my body worst when i wake and also particularly after rest. its a simple gene blood test if you want to get it checked out. Well worth it.

A doc told me that he had found up to 40% OF cfS patients have HLA-B27 histocompatibility.

[handmadebyemy]

I have joint pain and all-over sore/achy feeling a lot of the time, especially around my period. I've only been able to attribute it to hypothyroidism. Maybe its pots related too?

[Elegiamore]

POTS buddies, do NOT ignore the pain. My foot pain has been so excruciating that I finally could not put my right foot down to walk without screaming. I could no longer drive because of the unbelievable pain taking place when I pressed my foot to the pedals, as well as muscle pain in my thigh.

But all of my physicians totally ignored my pleas for help, just telling me to buy expensive athletic shoes and steering me towards expensive orthodontics.

The end result? The fascia, muscle/tendon that stretches from the ball of your foot to your heel, was so inflammed that it SPLIT IN TWO. FINALLY I got some attention but it was too late. I was in a heavy cast that I was too weak to lift to walk, so I was totally immobile/in a wheelchair for many weeks.

Now I have spent over $1000 in three months for foot therapy twice a week to the tune of $65/visit. If I stop going, the pain returns. It is INFLAMMATION, NOT fibromyalgia nor in my head. It is ruining my life.

I might add that constant, severe pain shot my bp through the roof over and over again. Then POTS symptoms got so out of control that my vasoconstriction lead to TWO HEART ATTACKS in two days. Heart caths showed that I had no blockages or blood clots and very minimal plaque buildup. Diagnosis: arterial spastic vasoconstriction closed my coronary arteries, caused by autonomic dysfunction, i.e. POTS.

Enough said.

[firewatcher]

I have some joint pains, particularly in my right hand and both knees.

My orthopedist (when he was explaining about my torn shoulder) made a few observations and told me how to differentiate between joint pain (possible arthritis) and connective tissue/tendon pain. When I make make a fist, my knuckles do not hurt (simple joint movement) but if I pick up a carton of milk, the whole hand/fingers hurt (lateral motion not involving the joint, only tendons.) If the simple movement had hurt, he would have investigated arthritis, but since it was the movement controlled by tendons that hurts, he went towards tendonitis/tendinosis instead. Like Julie said, mast cells can cause joint pain, since there is a still unexplained connection between connective tissue (tendons) and mast cells. It could also be something simple like gout, which could easily happen if your electrolytes/blood chemistry is off. We all know how wonky our labs can be! That one at least would have a fairly simple fix, as opposed to arthritis or tendon/connective tissue disorders.

There is no reason to accept constant pain. Our bodies are telling us that something is wrong.....all we need to do is find someone who'll listen and help fix it.

Keep us posted!

[issie]

POTS buddies, do NOT ignore the pain. My foot pain has been so excruciating that I finally could not put my right foot down to walk without screaming. I could no longer drive because of the unbelievable pain taking place when I pressed my foot to the pedals, as well as muscle pain in my thigh.

But all of my physicians totally ignored my pleas for help, just telling me to buy expensive athletic shoes and steering me towards expensive orthodontics.

The end result? The fascia, muscle/tendon that stretches from the ball of your foot to your heel, was so inflammed that it SPLIT IN TWO. FINALLY I got some attention but it was too late. I was in a heavy cast that I was too weak to lift to walk, so I was totally immobile/in a wheelchair for many weeks.

Now I have spent over $1000 in three months for foot therapy twice a week to the tune of $65/visit. If I stop going, the pain returns. It is INFLAMMATION, NOT fibromyalgia nor in my head. It is ruining my life.

I might add that constant, severe pain shot my bp through the roof over and over again. Then POTS symptoms got so out of control that my vasoconstriction lead to TWO HEART ATTACKS in two days. Heart caths showed that I had no blockages or blood clots and very minimal plaque buildup. Diagnosis: arterial spastic vasoconstriction closed my coronary arteries, caused by autonomic dysfunction, i.e. POTS.

Enough said.

You poor thing!!!! I feel so bad for you. Are you feeling any better now? I knew the autonomic system did terrible things to us, but never guessed that it could cause a heart attack. They always tell us our hearts are strong. That's really scarry, so many times I have the symptoms of a heart attack and ignore it thinking it's just the POTS. Maybe I should pay more attention.

I do believe that alot of our issues could be inflamation. If started using Ginger and Tumeric for that. I don't hurt near as bad.

I can sympathize with you on the foot issue. I'm recovering from breaking my foot off my leg. You are getting your physical therapy cheap -- mine is $221.00 a visit and that's the going rate here. I'm the one doing the work and all they do is massage my foot and leg to loosen it up and try to get the tendons not to rip. (They are all screwed down with screws though, but they shorten up.) I've started rolling my foot on one of those dryer balls with the little knobby things on them. That helps a whole lot to loosen up the bottom of your foot. I'm just starting to walk again and it is hard. My POTS is worse than ever, partly because of having to be in a chair and not walking for 4 months. Every time I stand up, OMG. And then my back KILLS me if I stand for very long. I'm not used to using the muscles in my back and I've gotten sway backed from sitting for so long. Having to stretch out the muscles in my back. They do not want to release or elongate. It's a vicious cycle and circle. It will just take time.

Here's hoping for you a speedy recovery. Just be patient, your foot will get better. Remember, one day at a time, one minute at a time and tommorrow is another beautiful day --- WE HAVE LIFE!!! One day, we'll be able to live it to the full.

[janiedelite]

Then once awake in the morning it begins again - the stiffness, the pain etc... Usually however after being awake for an hour or so - and moving despite how I feel about it - my symptoms improve greatly. It's like I go from 90 years old and crippled to a 70 year old for a bit and then finally I get to feeling almost normal

Yes! I hurt all over in the morning and HAVE to move in order to not just lay in bed and want to cry. Once I move, the pain is not so overwhelming except that most evenings I'm exhausted and painful from avoiding laying down much all day. I have the burning, sunburnt pain everywhere (mostly hands, feet and face), but I also just ache not so much in my joints but in all of my muscles and skin. And my back hurts all of the time too.