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kaymac
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Date Joined Jun 2008
Total Posts : 40
   Posted 7/26/2008 6:49 PM (GMT -7)   
So I've posted a few times about my horrible achilles tendonitis and how since April I've hobbled around and the pain is non stop??? Still another MONTH till rheumy appt (made 3 months ago).......
 
today I wake up hobbling around and notice pain in my right heel. Well crap! It too has  worsened as the day went on...what am I to do meanwhile with no feet??? confused
 

sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 7/26/2008 7:09 PM (GMT -7)   
Can you see your GP and ask about prednisone? Or an NSAID or something else.
Perhaps also try ace wraps they may make things less painful.

Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 7/26/2008 9:19 PM (GMT -7)   
Hi Kaymac,
 
You too eh!  Is this the worst pain or what.  I have pain in my heels and toes as well as the achilles tendon. Mine have been like this since early May. Started in the left foot, and now it's in both feet. I'd like to take an axe to both feet and get it over with. I'd rather hobble on freshly amputated stumps. 
 
Unfortunately, prednisone won't help.  But NSAID's might take the edge off.  They don't for me.  I'm supposed to ice my feet and wear supportive shoes all day long.  I'm seeing my rheumy in mid August and a foot specialist that same week.  I'm going crazy.  You're not alone.  We can both vent about this together!! 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


kaymac
Regular Member


Date Joined Jun 2008
Total Posts : 40
   Posted 7/27/2008 3:33 PM (GMT -7)   

So do you know if this is FM, Arth or Lupus related? I'm currently undiag, except for imflammatory arthritis and FM.

So u think the steroids won't help? I've taken the 5 day Medrol packs twice and Cataflam for 3 days. My PCP is wanting to give me 21 days of Prednisone now. I'm so torn as to take them or not. I've gained Lyrica weight already on top of my extra baggage. I'm having other problems, short of breath, palpatations and taking Pred will only add to the bad symptoms, plus fluid.

I work all day so I can't ice them down except for short periods at night. I know from what I've read there is nothing to do. what causes this??? How can u walk on two feel like this??

 


Ginny
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Date Joined Feb 2003
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   Posted 7/27/2008 6:49 PM (GMT -7)   
Oh Kaymac,
 
I'm sorry you're struggling with this too.  I can hardly manage walking at all right now.  You and I can be "gimp sisters".  LOL.
 
Yeah, my rheumy said that oral prednisone won't help with plantar fascitiis.  Or any achilles tendon issues.  Oral pred really only helps everything but tissue issues (nice rhyme).  What does help is injectable steroids. 
 
Oh, I totally believe it could be FM, arthritis or lupus.  I'm in the same quandry.  What the heck is causing this?  It could be one of those are all of them.  The fact that you are already diagnosed with inflammatory arthritis, it's probably that.  But I'm taking guesses here now!  Your medrol pack will help with any systemic inflammation going on.  So your arthritis is probably going to respond well to it as long as you stay on it.  But when it comes to localized tissue issues, you're not going to get the relief you need.  It sucks!
 
I'm on 15mg of pred right now for my lupus flare that I'm in.  It's not even touching the foot pain. I'm like you, on my feet a lot and can only ice in the evenings.  I'm a flippin' wedding and portrait photographer!!  I'm on my dang feet for up to 12 hours on Saturdays.  Nasty!!!
 
I'm still trying to research what is causing this for myself.  I don't see my rheumy until the middle of August, and then a foot specialist a few days after I see my rheumy.  I NEED answers.  I can't live like this.  You know exactly what this is like! I'm hurting all over, in just about every joint.  I do have a diagnosis of moderate/severe arthritis in my neck, and I have sacroiliitis.  So the likelyhood of it being arthritic in nature is pretty good I think. 
 
Keep pushing to get a diagnosis for your other symptoms.  At least you're being treated with prednisone right now.  That is a very good thing. 
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


kaymac
Regular Member


Date Joined Jun 2008
Total Posts : 40
   Posted 7/27/2008 7:16 PM (GMT -7)   

Well actually I am not on the Pred. I picked up the rx, but did not take it yet because I'm sick of steroids. I took 2 of the Medrol packs and when I called the pcp the 3rd time, he called this rx in. I'm thinking he is sick of me and just said "fine, I'll give her steroids" and called in 21 days worth! lol I don't know that for sure, I'm just saying.

My coworkers, family and friends are sick of me whining, but gosh this hurts so bad. Does your throb all the time whether sitting or standing? Mine at night will throb like a toothache. Sitting at my desk, it smarts, I am constantly re positioning my foot.

So you don't think the Pred will help this part pain even if it is related to Arthritis?

I'd like to know how yours started. For me I noticed that over a couple of days time, I began to limp like my ankle was sore. By the 3rd and 4th day, I noticed the back of ankle and I was hurting badly. I went to have it checked and got the diag with a rx for medrol and told to ice/heat, rest 2 weeks as much as possible. Did that and it didn't help. Called back, he called in another medrol pack.

But like went on and I had to work, and keep moving. I'm much slower than usual moving, walking, working, etc....I complain and make comments out loud like OUCH, OOCH....and this last week I told my coworkers I'm sorry if you're sick or me, but I'm sick of me too. This hurts and I'm going to complain and don't care who is tired of hearing me or not! LOL!

Then yesterday I realized my right foot is hurting when I walk. The same as the left! Unbelievable! I do know I am NOT calling my PCP. I will wait till Aug 28 to see this new rheumy.

Oh also, is yours swollen? My left foot by now, looks like a golfball on the outside of my ankle between the ankle bone and back of tendon. It stays swollen all the time. Also my right foot that has started is displaying pain all up my calf where the tendon is.

kaymac


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 7/27/2008 7:43 PM (GMT -7)   
Oh yes!!! Girl, you and I have the exact same issue going on with our freakin' feet.  I noticed the pain start in my left heel, and then by about day 3 or 4, I couldn't walk on my left foot at all. Then about 3 weeks later, I had pain under the toes on my right foot.  GREAT.  A month ago, the pain was so bad in both feet I was literally crawling to the bathroom when I got up in the morning.  The pain is worst first thing and then at night.  But I do have pain all day long, even when I'm sitting.  Just like you!
 
My left foot and ankle is swollen for sure. In the same area that yours is. My right foot doesn't seem to have any swelling, but the pain under my toes is excruciating.  Definitely, I have some pretty bad swelling in my left foot.
 
Are you wearing good supportive shoes all day long, even inside?  My rheumy told me to do that.  It really helps.  I have a pair of ECCO sandals that are super supportive and cushiony. I'm sick of wearing shoes all day long!  BAH!  I'm sick of myself too.  LOL.
 
Well, I'm on chronic prednisone and have been for 8 years now.  I'm getting no relief from being on it every day. So I really don't know if your medrol pack will work for the foot stuff.  I've been told oral pred just doesn't work.  If it's arthritis, we'll have to take something else like Remicade or something.  I just don't know.  So you've taken 2 packs and haven't felt an improvement?  What was the dose of the packs?  I understand completely that you're sick of steroids.  I have a love/hate relationship with them.
 
Are you exhausted by the pain?  I'm sooooo tired.  With my neck, lower back and now feet in so much pain, I'm absolutely exhausted. I have 10 weddings in a row to photograph starting next weekend.  I'm in complete disbelief that this is happening in my busy season.  Why does this sort of thing happen at the worst times? LOL!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 7/27/2008 11:02 PM (GMT -7)   

I just wanted to pop in and give you my support. I hope you both find some relief soon! I had (still have) feet issues, but they were slightly different - in the metatarsil area (ball of foot) and toes. A nightmare. Couldnt walk and was laid up for years. Gained a lot of weight due to immobility, steriods, etc. I'm doing better (with the exception of the weight) but have to be really careful. I wear sneakers 24/7 - with specially made orthodics - I often put them on first thing in the a.m. and take them off right before bed.

Anyway, I have been there - the nobody wants to be near me b/c I'm complaing so much or just constantly grimacing and sighing with every movement. The pain is so overwhelming it engulfs you at times it got so bad it literally made me sick. You can't get comfortable, you can't sit, stand, walk, etc w/o  excruciating pain. Had the throbbing too. It felt like I was hit by a semi most of the time.  My issues started with a weird feeling in my ankles as well....felt like there was a loose bolt in there or something.....I was a bridesmaid in a wedding and had to wear my sneakers through most of it (boy do they ruin a photograph!), I suffered through the actual wedding and most of the photos for 2 hours in some flats I purchased - it was awful!

Stretching did help eventually somewhat, combined with the good sneakers, orthodics, extra metarsil support, pain management meds, early on painkillers and muscle relaxants (I'm off all those now - just taking RA meds now), and a LOT of time taking it unbelievably easy.   

Hang in there. I know it's hard. Have either of you been sent to a podietrist yet? I would ask to go - all this hobbling is going to cause even more damage to your gait (??sp??) and your problems that you won't know which pain is from what. Get a professional to make sure you feet are still in correct form and if not - get the orthodics made. They are expensive, but can be worth every penny!

***

 

 


 


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 7/28/2008 6:55 AM (GMT -7)   
Yes, I"m having trouble with the metatarsal area of my right foot. I'm seeing a podiatrist at the end of August. I'm sure he'll be prescribing orthotics.  I was tested for RA in February and it came back negative.  Can that change quickly?  I'm a mess. How quickly do you notice the malformation of your joints?  Right now I "look" normal. Sure don't feel it.
 
Thanks again for your input and understanding.  Both Kaymac and I need it!!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


kaymac
Regular Member


Date Joined Jun 2008
Total Posts : 40
   Posted 7/28/2008 11:54 AM (GMT -7)   
Yes, thanks CaMama and good morning Ginny.
 
I can tell after propping up my feet all weekend, that it helped the swelling. This morning the swelling around ankles was better. I'm wearing my heel lifts and at work today, so far so good. But I know by end of day, the swelling will be there and they will throb, despite fluid tabs.
 
I'm guessing maybe my rheumy will deal with this and refer me on to the foot doctor if need be???
 
Yes, limping and hobbling is causing knee to hurt more which already has OA and back of legs.....
 
Don't take this wrong Ginny, but I'm so glad to find someone who hurts like me!! CaMama I'm sorry about your pain too and hope it continues to heal.
 
kaymac

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/28/2008 2:16 PM (GMT -7)   
Yes, test results can change quickly. I was ill for 9 months, I had a great GP she had told me during my first visit with her that she was 90 % sure I had RA. I did not have any noticably swollen joints and all the tests were negative. She never during nine months of negative tests changed her mind or doubted I was sick.
I took a nap one day and woke up with my right knee swollen to the size of a softball. That day all of the tests came back positive (they had all been run and come back negative two weeks before).

Having said that you can also be diagnosed even if all of the tests stay negative.
I hope you both feel better soon.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/28/2008 3:47 PM (GMT -7)   
HAHAHAHA, Kaymac, I don't take your comment the wrong way at all.  I laughed out loud when I read it.  I feel the same way, BAH!  It's just relieving to know you're not alone, right!?  My feet feel a tiny bit better today.  Probably because I've been a saggy old fart on the couch all weekend.  By Friday I'll be wishing I had that axe I talked about in an earlier post....
 
Yeah, i'd get in to see a foot doctor too.  I'm seeing one on August 25.  I see my rheumy on August 20 or sooner if I'm in really bad shape.  I hope we both get a diagnosis next month!  This is crazy.
 
Sjkly, thank you for settling that question I had about RA.  I'm pretty sure my rheumy will re-run those test next month.  I need to get this straight.... RA affects ONLY the joints that have synovial fluid in them right?  Or did my rheumy misdirect me on that one?  Our ankles are synovial joints aren't they?  Kaymac, my left ankle was really swollen on Saturday. It is a bit today too.  We'll keep each other posted on what happens next!  Take it easy. I"m going to ice my feet and grab a popsickle scool
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 7/28/2008 7:57 PM (GMT -7)   
Unfortunately, those blood tests are not accurate. I've had arthritis almost my whole life and the blood work has come back normal for quite a few years. In fact, last year, I took a blood test at 10 a.m. - everything came back normal (I found out weeks later),  inflammation, white blood count, etc....the odd thing is, at 3 p.m. that very afternoon I was hit suddenly with a cold and earache. At 10 p.m. that very night I was in ER with a massive dual ear infection, high fever, and respiatory infection (which all caused a flare of the joints as well, of course). Yet, you would never know that all happened the same day based on my 10 a.m. blood work.
 
A smart doctor looks at the signs and doesn't rely on just the blood tests. How fast or bad your joints deterioate is different for each person.
 
I'm glad you two found each other. HW saved my sanity a few years back. I wish it had been around when I was going through my feet issues. I was so alone and miserable. I went through months of doctors telling me I needed to see a shrink. . . .it was awful. . . . these high-and-mighty specialists who couldn't figure out where the problem was stemming from and decided it must all be in my head. My podietrist pretty much rescued me before I started believing those idiots. I haven't found anyone even close to his caliber since he retired. It is a shame.
***
 


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 7/28/2008 8:20 PM (GMT -7)   
You know, the tests for my lupus are unpredictable too. They tell me I'm "normal", but I feel like a freshly laid turd.  They don't match up most of the time.  My rheumy says, "treat the symptoms not the test results".  I totally agree with her. 
 
What was the outcome of your foot pain? Was it RA?  Man oh man, I'm having the pain under the toes near the fleshy part of the foot right now.  It's in my right foot.  A killer to go up stairs.  The heel pain is in my left foot.  I can't wait to see the podiatrist in August.  I need orthotics for sure.  To get me by, I bought some drugstore orthotics. I have nothing else! 
 
Is it common to have little to no pain in the fingers, but they look like swollen little sausages?  I have less strength in my hands and fingers these days too.  Gosh, I wish my rheumy wasn't on vacation.  I'm going mental with the "what ifs" right now.....
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 7/29/2008 7:11 AM (GMT -7)   
Well, it never seemed to be one cut and dry answer, however the best answer is:  Psoriatic arthritis is the main cause of my problems - foot and otherwise. 1/2 way thru my 1st podietry appt, the doctor said, "Let me tell you about YOU!" He spent the next  20 minutes telling me the part of the "story of my life" that I didn't tell him in the consultation (because I thought they had nothing to do with my feet) and expalining how it all relates to psoriatic arthritis. I was floored. He said, "....these are the things that happen to you...." and he was on the nose with every detail (told you he was awesome!) He said all those health and pain problems and symptoms, including my feet issues, are all the result of psoriatic arthritis.
 
To make matters worse, the mechanics of my feet were all messed up. He contributed that to having arthritis my whole life and problems with my knees swelling, causing me to walk funny to compensate for the pain. He also spotted some neuroma in my feet - I'm guessing that was aggrivated by the swelling and such as well. 
 
I have to stretch my calves deeply every day now.
 
For years, I had obvious signs of psoriatic arthritis (i.e., pitting of the nails) and as I changed rhuemy's over the years (insurance reasons) they all agreed it was psoriatic arthritis, now they say it is RA because the last doc or two I've had don't see those other signs usually.
 


kaymac
Regular Member


Date Joined Jun 2008
Total Posts : 40
   Posted 7/29/2008 7:15 AM (GMT -7)   
Well I made it thru my Monday on my feet. The heel gel lifts did help some. I kept my shoes on till bedtime too instead of walking barefoot on our hardwood floors. The swelling looked better last night too compared to last week.
 
I can't wait either till my appt. It's un nerving. I've displayed all the symptoms of Lupus although my tests since Jan have said otherwise. The first rheumy flat out insisted some arthritis but I have more Lupus symptoms than anything. I do hurt in every joint but have little swelling except my ankles.
 
I have noticed a few changes in my hands. On top of my left hand between my knuckles in one spot is swollen. That is all. My middle finger stays swollen too.
 
Keep me posted Ginny! Hang in there!
 
kaymac

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 7/29/2008 7:27 AM (GMT -7)   

kaymac - they thought I had lupus for a long time. As a child with JRA, then again as an adult. I have psoriatic arthritis and if you compare the list of symptoms to that of lupus, you'll find a lot of them are parallel.

****


 


kaymac
Regular Member


Date Joined Jun 2008
Total Posts : 40
   Posted 7/29/2008 10:05 AM (GMT -7)   

Yes, I have compared them. I also read up on the PA and think to myself that is me too. Especially since I have had a breakout all in my scalp of what one rheumy said was psoraisis and I needed to have checked.

I think sometimes I need to just quit reading the internet because I don't want to appear like someone who thinks they have everything wrong with them. But I do indeed fit into the catagory of Lupus/PA or sometime of those. Then again, it could be the FM....seems like everytime I go to PCP he says "it's FM related!" What symptom is not related to FM?? Goodness gracious! lol

kaymac eyes


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 7/29/2008 11:58 AM (GMT -7)   

LOL - I completely hear you! The doctors seems to use these catch-all names for things. I felt that way for a long time with the docs blaming my arthritis. The fact is, any auto-immune disease affects your whole body and they are all intertwinded to some degree...if they aren't, then they seem to cause other auto-immune dieseases to do it for them. It is ridiculous. 

My doctor explained that PA infiltrates more than your joints, it is known to affect your organs, tissues, and that coating around the joints (I keep forgetting the name of it). This is why (he said) I was constantly plagued w/UTIs, how once my spleen and liver were so severely affected by an acute case of mono they became a weak spot and actually hurt when I'm going in to a flare, and so on. One of the things he told me (more or less, it has been 12 years) that makes a lot of sense, "Some people have arthritis. They have a form of arthritis and when their joints flare, their joints hurt terribly. Some people have an auto-immune disease. When their joints flare, it's a total body experience.....that is you."

The internet can be so helpful but damaging at the same time but when you don't have solid answers, you start looking for anything and everthing that could be the problem. It helps you make sure no stone is unturned in the research to help get you better. I know it's hard not to feel like a hypochondriac, I've been there many-a-times, but when you are grasping for just a few answers you have to look at all the options. ***


 

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