I know I'm full of questions but I am trying to understand the nature of this condition and what to expect, so I'm sorry if I am too much.
I was wondering if it is normal to have shooting pains around any of the joints without any swelling or redness. It has been around my left ankle for the last couple of days. It hurts (and sometimes I think hear some cracking) when I walk. And when I'm sitting, I have those shooting pains that originate from the middle of my ankle and radiate up and down and all around my ankle in like a second. You know that kind of pain that makes you jump because it is so sudden. No swelling (not visible at least) and no redness but hurts very much when I touch my ankle. I was wondering if it is normal, if anyone else has experienced such a thing.
Oh, and also, my face has been so dry for some time that skin keeps peeling off, from my cheeks mostly. I have always had dry skin, but now washing with a cleanser or using lotion makes it hurt and makes my face red and a little puffy. They clean off the shredding skin though. I was wondering if dry skin like this was normal or common as well.
Dry skin, I am so bad with. I just can’t give up my long hot showers. There is lots of great advice around for managing dry skin, including coconut oil as a popular one.
For the pains, could it be the tendons? Tendon swelling and enthesitis are really common. Enthesitis is inflammation anywhere the tendons insert into the bone. There is not always swelling and redness associated with joint pain.
It doesn’t sound like the type of thing to rush to the doctor on, unless it gets worse. An antiinflammatory might be useful if you can take these, but again, not long term without talking to your doctor. best of luck with this.
Thanks Stoney, yes I don't think it is a thing that is urgent enough for me to go to the doctor again as well. This pain keeps coming and going, once every two or three weeks, lasts for a couple of days. I have an antiinflammatory medicine the doctor gave me to use only when I flare up, called Endol (its active substance is indomethacin and it's used specifically for inflammation associated with rheumatism or arthritis, I don't know if you have this drug there since I'm in Turkey). But I don't want to take too much of it unless I'm feeling particularly bad, and I got off it just a couple of days ago. But I really can't decide which is worse: get off the medicine and let the inflammation build up or take the medicine and feel even worse. And what exactly is bad enough that I have to take my medicine? Guess I'll learn in time... In the meantime it seems like I will keep bothering you guys :) Thank you for pointing out tendon swelling and enthesitis though. I had come across enthesitis but I didn't know what it was. Very well may be enthesitis, since I seem to have everything that I possibly could regarding my bones and muscles :) I might consider going to a doctor if it gets worse though :) and I shall definitely try coconut oil.
Stoney said:
Dry skin, I am so bad with. I just can't give up my long hot showers. There is lots of great advice around for managing dry skin, including coconut oil as a popular one.
For the pains, could it be the tendons? Tendon swelling and enthesitis are really common. Enthesitis is inflammation anywhere the tendons insert into the bone. There is not always swelling and redness associated with joint pain.
It doesn't sound like the type of thing to rush to the doctor on, unless it gets worse. An antiinflammatory might be useful if you can take these, but again, not long term without talking to your doctor. Nest of luck with this.
I am a lizard in more than one way. I go through these cold spells where I feel sooo cold. Umm, I also take warm showers. Taking an ice cold shower in the middle of winter… Honestly, I gave my dermatologist the bird on that one…
My ankles are back to being normal - swollen. My shoe size is 11. I wear size 14 3X wide. As for the pain, mine is typically burning or slow or pulsating. Sometimes it feels like it’s gone, but as soon as I touch it…
Enthesitis can be hard to diagnose often times it comes with no swelling and can be missed with various forms of imaging. However, a decent rheumatologist can figure it out with physical exam (at least with the feet).
Thank you for your concern Sybil. I don't have much of a "treatment". I only have the antiinflammatory for my flares. The doc said my condition was mild, and I believe he is right because my pain is very manageable at the moment. But I know it can get much, much worse and mainly that is what I am afraid of, hence all the questions, to see where I stand. Again, the doc said it looks like the disease is only at my SI joint at the moment, but he cannot promise that it won't spread to other joints. And now I'm wondering, has it spread to my ankle? Because the pain I feel at my SI is different from what I feel at my ankle. I also get shooting pains all around my body, my knuckles, my wrists, my knees, sometimes even my collarbone. But this is only a few minutes and it goes away. Maybe it's psychological? The thing is I started paying more attention to my body. Because as I keep saying in all my posts I have so many conditions and I have always been in pain that it is hard for me to differantiate. Is it scoliosis? Is it fibromyalgia? Is it my herniated disc? Can this be causing damage to my joints right now? etc. And I believe one of the reasons he didn't put me on a more serious treatment is because there is still doubt about my diagnosis and he wants to keep me under observation for a while.
sybil said:
I have shooting pains in my ankle and sometimes in my feet generally and I also get electric shock sensations in my ankle. Since I started on Humira my actual joint issues are much, much better. I think what's left is enthesitis and also some nerve issues.
I'm not sure where enthesitis stops and nerve compression starts, the feet & ankles are quite complex things and I sometimes feel there's an awful lot going on in them.
Like you, I tend not to worry about these pains too much - they come and go so I don't feel the need to take anti-inflammatories or painkillers. But I'm wondering what's happening with your treatment overall? PsA can do a lot of damage ......... and one thing I've learned is that, strangely, pain isn't always the best indicator of what our disease is up to.
You are not imagining those pains. There are all sorts of pains with PsA, and I think one pain can lead to another. The nerve pains around your ankle could be because of that SI joint. You probably have slight swelling and that can press on nerves. I had slight swelling in my feet for years and horrible neuropathy in the bottoms of my feet. My rheumy pointed out the swelling to me, which I couldn't even see. I thought they were normal. Once I got on Enbrel and the swelling went down I realized how swollen they were.
Idk if you're on a biologic yet, I didn't look at your profile, but once I finally got on Enbrel I felt a LOT better. And I was definitely a doubter and very scared to take any type of med--especially a biologic with all the possible SEs and weakened immune system. Since feeling better from Enbrel I'm way less worried about it and more worried about its effectiveness stopping or having to go off it if I get pneumonia or some bad bug! It feels so good to feel so good.
If your Dr finally feels sure in the dx of PsA, don't be afraid of biologics like I was. They have been a godsend to me. Good luck!
Second comment....I just read your profile. I saw your Dr told you that you have fibromyalgia. This is just my opinion, but a lot of PsA symptoms are the same as fibro, I think. When I started complaining of certain pains, one Dr suggested it could be fibro. I personally think doctors use that word loosely when they can't pinpoint the disease. A doctor once told me that the medical community in general thinks fibro is just imagined pain. That really fried my butt because I don't think most ppl imagine pain. I really don't. Maybe I'm wrong, but I can't believe ppl enjoy running to the Dr making up pain symptoms. But, I hate Dr appointments, so maybe I'm wrong in thinking other ppl hate them too. My tissue and muscle pain and tightness are PsA symptoms that are similar to fibro symptoms, but they are some of the most annoying symptoms that were relieved by taking Enbrel.
You are so very right about not enjoying running to the doctor. Especially given that I am quite young (though sometimes I feel really old), I get depressed every time I have to go to the doctor's office.
I agree with you on the fibromyalgia thing. And I read that it is quite common for PsA and fibro to exist together. Also, I believe my fibromyalgia is quite normal given that my scoliosis makes all the muscles around my spine become spasmed and clustered. Actually, my physical therapist called those weird clusters "fibrosis" or "fibritis" or something. You can see those muscles all clustered up with the naked eye. Sometimes I feel like there is a big fish sleeping right next to my spine :)
Yes I am afraid of the biologics, because I tend to catch every type of cold or flu going around. But if the doctor was certain that I definitely have PsA and the biologics were the right way to go, of course I would listen to my doctor. Hopefully it will stay as it is right now as my doctor predicted, and won't get worse. (Actually this is usually how it is with my body, I have all sorts of chronic diseases but they never get really bad. Maybe it will be this way with PsA too :)
Grandma J said:
Second comment....I just read your profile. I saw your Dr told you that you have fibromyalgia. This is just my opinion, but a lot of PsA symptoms are the same as fibro, I think. When I started complaining of certain pains, one Dr suggested it could be fibro. I personally think doctors use that word loosely when they can't pinpoint the disease. A doctor once told me that the medical community in general thinks fibro is just imagined pain. That really fried my butt because I don't think most ppl imagine pain. I really don't. Maybe I'm wrong, but I can't believe ppl enjoy running to the Dr making up pain symptoms. But, I hate Dr appointments, so maybe I'm wrong in thinking other ppl hate them too. My tissue and muscle pain and tightness are PsA symptoms that are similar to fibro symptoms, but they are some of the most annoying symptoms that were relieved by taking Enbrel.
Ladylazarus, you are not imagining any of this. Or rather, if you are, so are lots of people here. And I’m with GrandmaJ: people don’t enjoy running to othe dr making up pain symptoms. I had tingling/shooting pains in my feet for quite a while before they finally diagnosed me. I also had aching shins – couldn’t possibly be arthritis, could it, because that’s in the joints. Right? Wrong, in the case of PsA, anyway.
As for the dry skin, I complained of dry and itchy skin, and toenail fungus, for years. No, for decades. I’d tell the doctor and she’s say “get some good moisturizer” and she’d give me an anti-fungal for nails. Those didn’t work, so I thought I just wasn’t using it enough or correctly. The insides of my dark clothes were coated with “dry” skin flakes. I quit telling the doc because I knew what she was going to say. And I gave up on the nail fungus because I thought that pursuing it was vanity. Of course, it wasn’t dry skin and toenail fungus. It was psoriasis. Had I been diagnosed with that, they might have realized that I had PsA before I lost many joints to the disease.
Do not hold back, Ladylazarus, with your concerns. You aren’t imagining this, and it is important that your doctors know everything. As Sybil mentioned, pain is not an accurate guage of the severity of your disease: I ached all over for years, and my feet hurt. What nobody knew is that I have a high tolerance for pain. I probably should have been immobilized with the PsA, and in screaming agony with my feet: that might have resulted in a diagnosis of PsA. Instead, my disease was correctly diagnosed as being severe only after I had a great deal of damage.
You are not imagining these things, or making mountains out of molehills. Tell your doc about the “dots” so that they can be connected to give an accurate picture of your disease.
I know it is ironic, but I am glad to hear that those pains are "real"! You have no idea how many times I heard the doctors say "it's psychological" or "it's the stress" or "it's all in your head". Four or five years ago, I went to the doctor with a very sore throat and I could barely speak, he diagnosed me with laryngitis and told me that "it was because of stress". I was outraged!
And as you mentioned, I think even if I didn't have a high threshold for pain when I was younger, I think my threshold became higher and higher with time. Because it is impossible to live with the pain tying you to bed all the time. Just today, for example, I walked for 4 hours with the pain still in my ankle, and I could feel the SI pain acting up just a little, but I kept on going anyway. And for me to say that I am in pain, it must be intolerable. People would be really surprised if they knew how I actually felt everyday!
So I will definitely tell my doctor everything the next time I see him.
Seenie said:
Ladylazarus, you are not imagining any of this. Or rather, if you are, so are lots of people here. And I'm with GrandmaJ: people don't enjoy running to othe dr making up pain symptoms. I had tingling/shooting pains in my feet for quite a while before they finally diagnosed me. I also had aching shins -- couldn't possibly be arthritis, could it, because that's in the joints. Right? Wrong, in the case of PsA, anyway.
As for the dry skin, I complained of dry and itchy skin, and toenail fungus, for years. No, for decades. I'd tell the doctor and she's say "get some good moisturizer" and she'd give me an anti-fungal for nails. Those didn't work, so I thought I just wasn't using it enough or correctly. The insides of my dark clothes were coated with "dry" skin flakes. I quit telling the doc because I knew what she was going to say. And I gave up on the nail fungus because I thought that pursuing it was vanity. Of course, it wasn't dry skin and toenail fungus. It was psoriasis. Had I been diagnosed with that, they might have realized that I had PsA before I lost many joints to the disease.
Do not hold back, Ladylazarus, with your concerns. You aren't imagining this, and it is important that your doctors know everything. As Sybil mentioned, pain is not an accurate guage of the severity of your disease: I ached all over for years, and my feet hurt. What nobody knew is that I have a high tolerance for pain. I probably should have been immobilized with the PsA, and in screaming agony with my feet: that might have resulted in a diagnosis of PsA. Instead, my disease was correctly diagnosed as being severe only after I had a great deal of damage.
You are not imagining these things, or making mountains out of molehills. Tell your doc about the "dots" so that they can be connected to give an accurate picture of your disease.
Because when they say those things they are “off the hook” until the next time you appear in their office. We all know that doctors are very busy people, but with this disease, in order to get an accurate diagnosis, it often takes a doctor who is doggedly determined to put all of those tiny puzzle pieces together.
LL, I can’t remember whether I told you about the book that I recommend under BOOK REVIEWS (above). Well worth getting!
Yes exactly! But given I had my %90 diagnosis of PsA at my second visit to my rheumy, I think I was quite lucky. And I was also lucky that my doctor is a professor and the hospital he works in is a teaching hospital, and there are always students in his office. So when he examines me he asks me all kinds of questions and listens to every little detail I give him. And then while he explains my condition to the students I learn all about it as well, which is not what I am used to, most doctors try to finish the physical examination as soon as possible and they just tell you what medicine to take and in comes the other patient :) So at least I was lucky at that front, after the horrible history I have with doctors.
I will definitely check out the book reviews. Thank you very much :)
Seenie said:
It's so easy for a doctor to say -- It's stress You need to exercise more Eat better Quit driving yourself so hard It's OA. Happens at your age. Lose some weight Get some new orthotics Take a warm bath Put your feet up Stop worrying so much You've probably got fibromyalgia Must be a bug Because when they say those things they are "off the hook" until the next time you appear in their office. We all know that doctors are very busy people, but with this disease, in order to get an accurate diagnosis, it often takes a doctor who is doggedly determined to put all of those tiny puzzle pieces together. LL, I can't remember whether I told you about the book that I recommend under BOOK REVIEWS (above). Well worth getting!
I agree with the others- not in your mind! I had doctors telling me my pain, exhaustion, etc. was in my mind for years. Many, many years. I wasn't diagnosed with PsA until I was 36, and I've had symptoms since I was four or younger.
Thank you very much and I am sorry that everyone had to live with years of pain and discomfort before getting diagnosed and treated. I am so glad I joined the forum though. After all, it seems like it isn't the people you are closest with who gets it, but people from around the world going through similar things as you are. That is such a relief for me, not feeling alone in what I am going through.
nym said:
I agree with the others- not in your mind! I had doctors telling me my pain, exhaustion, etc. was in my mind for years. Many, many years. I wasn't diagnosed with PsA until I was 36, and I've had symptoms since I was four or younger.
It sounds like you are in a great spot for diagnosis and treatment, LL. A teaching hospital with students around, and a professor holding tutorial is a GREAT situation. The diagnosis and treatment of my disease started to gain traction when I went to a research clinic, which has trainee specialists working with the prof. And my other specialists are now all at the teaching hospital. It has made a huge difference to the course of my disease and the quality of my life.
The trouble with having a doctor tell you that your pain, exhaustion, etc. is all in your mind (as Nym said), is that after a while you begin to believe it. And that is a very bad thing.
We’re glad you joined us as well, ladylazarus. Feeling that you are not crazy and not alone is invaluable. And think of all the new friends you’re making! LOL
I agree, ladylazarus! I don't know where I'd be if I hadn't found this group! Beware of the disease progression. My rheumy told me when he diagnosed the PsA in 2008 that since my symptoms were mild and not giving me too much pain, that was most likely the way the disease would continue--not too severe. And it did for a few years. But then all hell broke loose. Over the next couple of years things went downhill and I felt like I aged a lot (I'm 61, but I felt like 90). I started saying I didn't think I'd make it to 70. I'm not saying this will happen to you, but watch out if you start feeling a lot worse, it could be the disease progressing faster. I should mention my psoriasis also got out of control.
Thank you for your concern Grandma J, I will definitely tell my doctor if I am feeling worse. For the psoriasis though, I have had this little patch on my right wrist for years now, and I thought it was eczama (I still can't believe it's psoriasis, hardly any scaling, just very red and itchy). But my doc said it gets mixed up a lot so I shouldn't use anything and go see a dermatologist again if/when it gets worse. But a couple of years ago, I had this very big patch on my right hand, something like 2x5 cm2, I was really ashamed of it. And that one did get scaly at one point. It was like an elephant skin. But it kept flaring and going away and flaring again for like a year before I saw a dermatologist (silly me, right?) and when I finally did there was hardly anything visible so I described it to the doc and she said it was eczama. Maybe it wasn't. I have always had itchy skin. When I was a kid it was really bad between my fingers, they were all red and itchy, the doctors had cut me off of sugar and milk and stuff. Then again, when I was 15-16 I used to pick those white scales from my head and it would bleed sometimes, kinda looked like dandruff but it was attached to my head :) My mom told me it was the stress (see, again!) and she had them when she was my age too, so I never saw a doctor. My little brother did though, similar condition on the head, and his doctor said stress also :D it's kind of funny I think. My mom still says "stress" when I ask her if it could have been psoriasis. And on my second year in college, I used to scratch my legs until they bled, but no scaling or rash or anything. Just itching. "Stress" you see. So when it comes to psoriasis, I still don't know where I stand. I think that's one of the reasons my diagnosis is still under question. Because I never properly got diagnosed with psoriasis (if I actually had it).
Grandma J said:
I agree, ladylazarus! I don't know where I'd be if I hadn't found this group! Beware of the disease progression. My rheumy told me when he diagnosed the PsA in 2008 that since my symptoms were mild and not giving me too much pain, that was most likely the way the disease would continue--not too severe. And it did for a few years. But then all hell broke loose. Over the next couple of years things went downhill and I felt like I aged a lot (I'm 61, but I felt like 90). I started saying I didn't think I'd make it to 70. I'm not saying this will happen to you, but watch out if you start feeling a lot worse, it could be the disease progressing faster. I should mention my psoriasis also got out of control.
Oh LL--ashamed of the patch on your hand--why are we ashamed? I spent the past 40 years being ashamed and embarrassed of my psoriasis! I wouldn't tell anybody outside the immediate family I had it, and wore long pants all year 'round even when it was 100 degrees F. For many years I'd use tanning beds and sun bathing along with my cortisone creams to clear up and/or conceal it enough so I could feel less embarrassed when we were going on vacation and planning to swim in pools, etc. But the last few years nothing could clear it up--especially my legs. Interesting about the itch and no psoriasis. My skin would usually itch a lot before psoriasis broke out, and the psoriasis itched even more. My theory is that psoriasis/PsA are one in the same--the psoriasis can be under the top layer of skin so that you may not even see it--but you felt it in the form of an awful itch. I did see a dermatologist when mine broke out in my early 20s because it covered about 50% of my body at first.
Now that everybody's talking about having these little patches that aren't dx'd as psoriasis at first, I'm worried about our 2 oldest kids. Our son has had patches that come and go on his face the Dr has told him are seborreic (sp) dermatitis. Our daughter lately has had a patch on her cheek by her ear. I give them my betamethasone to use and it clears up for awhile. Our 3-yr old granddaughter has "eczema"--hmmmm--on her chest, arms, legs and butt. Omg I feel so bad to think they may end up with bad psoriasis and PsA someday!
What is it with all these autoimmune diseases? Do you guys think they're more common now, or is it just that there's more knowledge about them? It seems like every family has a person or several people who have some sort of autoimmune disease! My dad had celiac and looking back, I think the toenail "fungus" that plagued him all his adult life was probably psoriasis. We never could cure it. My one sister had juvenile diabetes--I'm not sure if that's autoimmune. I found out a couple cousins have RA--is that autoimmune? I have quite a huge relation-at least 70 first cousins. So, really, there isn't a large percentage of family with autoimmune disease.
It's just disappointing when one knows that they are passing the genes on and nothing can stop it. It's funny, I was so close to my dad. His toenails were horrible, the--ahem-fungus was so thick. I would work on them for hours about once a month. He'd always tell me not to worry how much I took off--it didn't hurt. He'd give me a dollar for doing it. None of my bros and sisters cared about him as much as I did. Funny how I was the only child who inherited his "psoriasis"! I'm glad I was so close to him and it's not his fault I got an autoimmune disease. But, I somehow feel that I am indirectly responsible for passing the bad gene on to our kids. Actually, they're getting it from both sides because my husband's dad and a couple brothers had psoriasis! :-(