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lainie

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 #1 
My aching started out with both at the same time, and only the lower legs, but not in the calf but on top of my legs.  It was like aching shins???  It was just weird.  And the aching came deep, my hubby used to rub them for me.

Now, it's turned into my whole right leg, same feeling, but now all the way up to my top thigh and it's the whole thing.  I'll wake up with it off and on all night sometimes or I'll wake up with it and it's there.  The aching again is really deep, or it feels really deep.

Also I've been having more and more episodes of swollen hands and feet.  At first my docs thought it was due to sleeping on my hand or side wrong.  That I could agree with but it seems to be ramping up with more incidences.  I mean it happened the other day while I was sleeping on my back.  My right foot was swollen for hours.

Anyone else get these things too?
Robinj

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 #2 
Do you have kidney involvement?
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
taffylinden

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 #3 
Adding to Robin's question. Have you had ultrasounds or MRI on the leg to see what's going on? Also, is it just your right leg, or your left leg, too? (Title of post has me wondering.) 
lainie

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 #4 

So far regarding the kidneys, not yet.  I  just recently got some mild markers (post is a few threads below) and I took the results to my new pcp, who agreed he feels something autoimmune is going on... before I had been faced with the *Nothings wrong, or it's all in your head etc* but I was able to show him some rashes and recently a few weeks back I had horrible pain in one of my wrists, much more pain then ever, and it was swollen so he said tendonitis etc.  But my numbers are mild at the same time, but I'm just glad they finally showed up.  I do not want to return to the orig Rheumy so he's trying to find another one for me.  In the mean time I've had more leg problems so I'm starting to think it's more then just sleeping wrong.

When I've had pain in both legs in the past, the aching in the shins feeling, it was in both and from the knees down.  But the most recent ones have only been in one leg, the right one going all the way down and all thru the leg, not just the shins.

It's been hard because I have been going back and forth between my health issue's and my own son's issue's at the same time.  Right now he's had symptoms that look like they could be gallbladder since pain started last sunday and we took him to urgent care.  But see he has Gastritis and also IBS and this time his pain went all the way up to his right shoulder and he was crying when he came to us.  His meds weren't touching it.  The shot and stuff helped him on sunday but they have continued so I took him into another doc and he's due for a ultrasound to figure it out tomorrow morning.  He's having problems with urinating too, so.... Sigh man I feel so overwhelmed.

Anyway, with my knew issue's with the leg pain and it increasing I have been wondering if this was an autoimmune issue or even a lupus issue.  I fit many symptoms of Lupus but I know not to really call it yet as there's many out there that can look like it.  But both myself and my son have started getting the dry mouth, nose and eyes, and we both have terrible joint pain etc... 

Anyway ok so I'll put my son's issue's aside... and go back to me, sorry my anxiety just seems to make this all worse and I end up babbling about both of us.  

But.... should I go back to my pcp regarding my legs?  My right foot was super swollen the other day when I last had pain and the swelling lasted all day...

Cakelady

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 #5 
I have problems with both my legs. My right leg will just give out and I will find myself face first on the floor. Ask your doctor for some pain patches or cream to rub on your legs it helps. Ice also helps my rhemy also gives me shots in my legs when the pain gets unbareable
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lainie

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 #6 
Hi, actually I do have some cream I use for when my wrists, thumbs and hands hurt. Didn't think about it for my legs. Great idea. It's something that a special pharmacy mixes for me in Merced and then they send it out to me.

It's a mixture of different meds. I never thought about using that. I just always think about it for my hands because that's what my pain doc prescribed for me. I have a cervical stenosis and the meds he gives me for that never work for my hands for some reason. In one hand I have osteoarthritis and even tho I have the same pain in the same exact places in my other hand the stupid X-rays always say it's due to an old injury which totally confuses me and makes me kinda mad because I've never hurt it.

Never the less it does work so I'll try it for my legs. Thanks, seriously because the ache can really hurt. It started up again last night but felt milder so I was still able to fall asleep. Still had to take a melatonin but was happy I wasn't up and down due to the pain.
taffylinden

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 #7 
I get deep aches in both legs, sometimes bad enough that I can't sleep, and my ankles are always swollen. I'm pretty sure mine are due to vascular issues from lupus. I also have livedo reticularis and Reynaud's, and when I'm out in the sun, I get these little red spots my rheumatologist said are leaky capillaries. 

For me, ice and cold make it worse. I get some relief from a hot bath, but what helps most is deep tissue massage. Maybe worth a try?
Robinj

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 #8 
" I fit many symptoms of Lupus but I know not to really call it yet as there's many out there that can look like it."


Lanie, 
Without reading back on all your posts, do you have a dx? 

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
lainie

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 #9 
Yes Taffy, swelling in my right hand (but it will go away within an hour, why some of the doc's said I must have slept wrong) and in both feet.  I got a new doc, well PA recently and he's much more supportive, although I do like my last one, I just think she didn't know how to help me.  And it doesn't help that the only Rheumy in town isn't easy to work with.
Anyway, I also get the little red spots on my arms when I hit the sun, and that was what I showed my PA the other day, pic's of them.  I also have a few here and there on my thighs, but only a few and spread far apart from each other.  Their red and very tiny.  But I didn't think they were anything since I hardly have many.
I do get the cold hands/feet thing, have had that for years but no color change that I remember.  I have the dry mouth, nose and eyes.  Nose and eyes are the worst as I get the sores in my nose, nosebleeds and my eyes, omg they go thru a phase where they hurt so bad until I use some visine.

Cervical Stenosis in my neck along with arthritis, lumbar problems, can't remember the exact name unless I go looking for paperwork, but my disk is sorta like slipping out at an angle and I've got arthritis in my hips and Osteoporosis.

Pain in all other joints, shoulders, hips, knees (water in knees right now plus problems in the other knee from disclocating it twice when I was younger)  I guess arthritis since i havd the water in the knee, but the tendon's etc are also loose and I might need surgery.  Torn meniscus.  But both knees are killing me.  Lately, since last 6 monthsish, I've had a bump behind my achilles tendon and it will flare and boy that really hurts and I am no runner.

I have Asthma that developed during my middle child's pregnancy, thyroid problems with my third.  Ended up having 2/3 thirds cut out due to an open biopsy.  No cancer.  Yeah.

Years ago I had Pleurisy.  A year ago I hate Pnemonia that caused some scarring in my lungs.  But I was in the hospital for the weekend because my BNP TEST oops was off the charts and they thought i was having heart problems.  I see a Heart Doc on a regular basis, I had to have an angiogram around ayear ago because I didn't pass my stress test.  came out fine but he said something like GERD with small arteries or something like that.  I also have High Blood Pressure.

A sleep problem that I am still trying to get figured out.  Having a second opinion with stanford.  The sleep place here just gave me a psg, without an MSLT.  That MSLT the next day can tell me weather I have Narcolepsy or not.  Possibly mild Cataplexy, but not sure.  I was laughing the other day and all of a sudden my knees dipped.  Was really really weird.

Uhm.... Right Now I have all sorts of rashes all over my scalp.  Doc said Seborric Dermatitis like on my face, but see in the past when it affected my scalp it affected the WHOLE thing and itched.  These are spots that hurt an crust up.  I know because I constantly pick at them due to my anxiety.  I have like 20 of them all over my head driving me crazy.  Uhm... if there's more I'll post it here, but I just woke up and I'm kinda foggy.  Oh yeah, and memory problems big time.   My family has wondered if I'm getting dementia or something its so bad sometimes.  

Some headaches, but they come and go.  My wrist and hand pain is the worst tho because we use them all the time.  And sleep , all I wanna do is sleepppppppp.  I've had the joint pain that started in my 20's but seemed to get worse and worse.  I kinda ignored it because I had 3 kids with spec needs and the last two with HF Autism.

Oh and btw a massage would be awesome!  I keep thinking about it but never schedule.  Also remembered that I have had swollen lymph nodes in my armpits for years.  Like one of the is the size of 3 fingers long... forgot about that.  Have had many mammo's, it's all good in that dept.  also a few years back lost 90 pds, kept it off painstakenly and then a year ago I started blooming up again.  So damn depressing...
lainie

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 #10 
You know, even without a dx, I still hang out and read here because I can always read something and go wow, me too.  Only place I know to go, except for one other place that I feel like I belong due to similar symptoms as everyone else.
lainie

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 #11 
Oh and off and on mild fevers here and there. Anything from 99 to 101 sometimes with no other flue or cold symptoms etc.
Mr. Bun

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 #12 

Lainie?

"Still had to take a melatonin but was happy I wasn't up and down due to the pain."  



(5)    Melatonin and Rozerem (ramelteon)

Melatonin is a hormone secreted by the pineal gland in your brain that regulates other hormones in the body that control how your body reacts to daily patterns of light and dark. Melatonin release is suppressed during the light hours of the day and stimulated by dark, helping you stick to patterns of nighttime sleep and daytime wakefulness. As a result, melatonin is often used as a sleep aid over other medications. Melatonin and melatonin-containing supplements should be avoided in people with lupus and other autoimmune disorders because they may stimulate the immune system. In addition, people with these conditions should also avoid the prescription sleep aid Rozerem (ramelteon), because it mimics melatonin in the body. It is important that you understand the necessity of avoiding both melatonin and Rozerem, since sleep aids are often used to help people with fibromylagia and other conditions to attain normal sleep patterns. In general, be sure that you speak with your physician before taking any new medications or supplements.


https://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/

sabrinabythesea

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 #13 
OMG, I've been living with 24-hour shin splints for four weeks now. And if I try to walk up a ramp or do steps, even just a few...

And my calf muscles spasm and know while I'm walking down the street. I've learned the worst thing I can do for my day is to walk quickly - not even run - to catch the morning bus. Compression stockings help, but I'm a poor college student and the cheaper ones on amazon for runners - well, they help. But they are thick and hot and uncomfortable and hard to tolerate all day every day. And if you put on compression stockings after putting on ben-gay or asper-cream or any lotion at all, it degrades the elastic power of the socks pretty quickly. 

I'm going to end my internship known not as "the woman who wrote some code that made our company better" but as "the woman who wore rainbow stripe knee socks every day." I've tried to inform everyone above me on the staff chart, appropriately, about lupus...but it's so frustrating and it feels inappropriate to always talk about my health. It's a summer college internship with a big company and I'm only 4 weeks in and my health has degraded, and continues to degrade, suddenly and painfully. And, in this state, I have no insurance coverage. I'm calling my home state rheumy Monday for no advice, but I shouldn't expect him to work for free.

The big deal is that this is somehow showing me how deeply lupus might limit the course of my life. I'm scared. And pain demands to be felt! I want to have the willpower to just ignore it, but I'm crying in elevators...

But I've always been a walker. I'm not walking more miles per day than usual. This shin pain is insane! You're not alone.
lainie

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 #14 
Mr. Bun..... C R A P  .  You are kidding me????  Sigh... so as to give a bit more history of myself.... Ok so my joint pain started years and years ago, but I have two kids with Autism and everything in my life regarding me and my health just got shoved aside.  It was all fighting for their services etc.  Anyway, around 6 yrs ago I developed this odd sleeping disorder... So far OSA but only very Mild Apnea.  I was never checked for Narcolepsy because in order to do that you have to stay the next day for another test called a MSLT.  My Doc didn't know anything about that.  Anyway, I'm waiting for my insurance company to ok another test at Stanford...

So my sleep was really weird... I was having serious Excessive daytime sleepyness where I was falling asleep in the middle of convos with people, I was falling asleep at stop lights it was awful But I also can switch and have terrible insomnia.  Now, I do not know what to do.... ugh.  How is Valarian Root?  Have  you heard anything about that?

I also have to take pain meds because of a Cervical Stenosis but they do not make me sleepy because I've been taking them for years etc.  Built up that tolerence you know?  I also take Valium but they mentioned at stanford to NOT take it as a sleep aid until they find out what's happening.  I was fine with that as my doc;'s only wanted me to use it for a muscle relaxer and my anxiety.  But what I've done is move from melatonin, then if I develop the tolerence move to Valerian Root, and then to flexeril, then Melatonin all over again.  I'm lucky when I don't have the insomnia, but I'm not gonna get help soon for this sleep study because I have to wait forever (long story that includes my stupid insurance co denying it two days before I was supposed to go).  

Well I guess I'll just do what I can until.... *Mad face* this sucks big time.


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