I know exactly how you feel. I love going for walks and I learned how to crochet a few years ago - something I always wanted to learn watching my grandmother as a child. But now, those things are difficult - crocheting an impossibility. I’ve been on Enbrel, which worked great for 5 years, and then all of a sudden it stopped. Then I went on Humira, but it didn’t do anything, so now I am on the MTX and Simponi, but 9 months later and I don’t notice significant improvement. I do have a psychologist and counselor to help with me with meds and therapy for the depression and anxiety thankfully.
hamishhead said:
That exactly it. PsA causes europathy which causes all these odd problems we have. End of Dx!
The real issue is living with it. For me, getting off MX and on to Enbrel and now Humira was great as they slow the progression of the disease without the side affects. I was told Enbrel was the long term answer but it is now known to lose its efficacy for many patients after a while, hence the Humira now, in my case, which will last how long? I initially thought these medications would get rid of the pain which they don't although I am very grateful that they reduce it. This, coupled with return to extreme pain and feeling so ill between medication changes, hits the mind and knowing you are living with both increasing restrictions and with a time bomb, barely suppressed, causes depression which discussions with a physcologist has helped me to deal with even though my mind never leaves off questioning it all.
And all the little losses. I couldn't walk in the rainforest with my wife yesterday because of the pain and not only could I not enjoy the walk with her but she came back with a photo of a beautiful, rare, 6 ft python I have always want to see. Blast you PsA!
Suzanne Hall said:
I looked up MN, and I don't think it fits into that category. My numbness has occurred on the fourth and fifth toes of both feet, although the left feels "more dead" than the right. The pain in my feet tends to go more in the area of the arches and achilles tendon area. Initial Dx is Neuropathy which pretty much is kind of bogus because it just means the nerve is inflammed. I figured that out on my own - I just want to know why this disease has gotten so aggressive over the past year and what can be done so slow it down. It seems like it's something new everyday....this morning I had to go into work and I was also cleaning a spill on the front of one of my file cabinets. (I drop stuff a lot lately) While cleaning this spill my right ring finger "locked up". It was so weird...I kind of panicked because it looked broken..it was in the oddest position...and then I kept trying to move it/bend it and it "clicked" back into place. Every time something weird or different happens I have to wonder if it's related to the PsA? I'm also pretty sure that I am having some reaction to the MTX because after my dose yesterday, the hives/rash has returned. I often find myself thinking about my near future and wondering if I should start investigating disability benefits in the event it comes to that.... Oh yeah....I suffer from depression and anxiety which just adds to the worry, which I know isn't good....I try to relax and be positive, but its hard when pain is always prevalent. Sigh......
Well. My answer to Suzanne seems to have caused a firestorm! Suzanne, my friend, I was not trying to diagnose you over the internet. I was trying to share a story with you about something similar that happened to me, that you could choose to read about or not. You will hear many different things about what is wrong with your foot, the word "neuropathy" among them. You're so right...a neuropathy can be a hundred different things, one of which is Morton's Neuroma, which is also known as morton's neuropathy. Confusing. It's even more confusing because MN comes in so many different varieties, and can occur between any combination of contiguous toes on one foot, although it is most common between the third and fourth toes of either foot. When people say "neuropathy," I usually ask "which neuropathy" or "what kind of neuropathy? There are many different kinds. This podiatric surgeon I saw was actually the doc who found my PsA in the beginning when he was evaluating me for plantar fasciitis years ago. He knows his stuff. He's the one who sent me to my current rheumy, so I do trust him to look at me and evaluate my feet.
Okay, I'm through now. For those of you who thought I'd given Suzanne bad information, I can assure you, it was not my intent. In fact, it wasn't my intention to offer any recommendations or diagnosis of any sort. I'm not a medical practitioner. But, hey, Suzanne, isnt' it great to know you have so many people looking out for you! I hope you are feeling better soon! I'm still in great pain and feeling cranky. lol But I hope my crankiness has not impacted my messages. This is a friendly board for the most part. I'd like to keep it that way!
Sorry if you thought I was having a go at you. Not at all, the discussions just brought up for me how badly I have been diagnosed by so many doctors other than the rheumatolgist. I find it bad enough dealing with this without ignorant Doc's refusing to listen to me and my knowledge of the disease and trying to add complexity to dealing with PsA when, for me, it's fairly plain that PsA is the cause and I'm just wanting relief for a problem.
So, sorry if you thought I was upset by what you said but it was all just good discussion to me. Like you, I'm in lots pain and perhaps that is also reflected in my thoughts and words.
Your many contributions always seem helpful and caring.
Hi Byrd…I didn’t take your post as trying to give me a Dx or being cranky in any way. In fact, I find it interesting that all of us have so many different other “side issues” along with this disease. I appreciated the information on “MN” because I had never heard of it, and wanted to look it up. I am always looking for information to take to my doctor at my next visit because I am pretty sure she is focused on the “usual” things that occur with Rheum patients, but not every patient is the same. I often find myself somewhat “self-diagnosing” and trying to find additional research as to whether or not PsA is the cause. I appreciate all the information I get on here!! Have a great day!!
It IS interesting the "side issues" which we all seem to have. This thread started with "Numbness". Yes, in fact, that's how I found this forum: of course I was self diagnosing, 'cuz my family doc was baffled by it. (Never discussed it with the rheumy, but will next time.).
I was thinking of starting a twin thread to "numbness", subject "Burning". Maybe I'll do that anyway, to attract more input. My PsA is primarily in my feet (I hate to add "for now" but I fear it is so). My feet BURN. Like, call the good looking guys in the fire engine, my feet are on fire! I'm betting I'm not the only one ...
And speaking of side issues (we were, weren't we? ;-) while I've been on the prednisone we all love o hate, my carpal tunnel issues seem to be on hold. Yes, and I had the surgery this summer. Didn't help much, BTW, and it hurt like h#ll .
No, not every patient is the same, but there are definitely patterns. Trouble is, one family doc (that would be yours, ditto mine) never sees enough PsA patients to detect the patterns. And a rheumy doesn't have time to chat about them, except maybe in passing, like "Yes, numbness, don't worry it happens.".
Thank goodness for the net, or we'd all be alone wondering!
The BURNING!! oh yes I am very familiar with that! My feet feel like they’re on fire! I’ve often put them in cool water in the tub because I can hardly stand it!
Seenie said:
Hey there, Suzanne and everyone
It IS interesting the “side issues” which we all seem to have. This thread started with “Numbness”. Yes, in fact, that’s how I found this forum: of course I was self diagnosing, 'cuz my family doc was baffled by it. (Never discussed it with the rheumy, but will next time.).
I was thinking of starting a twin thread to “numbness”, subject “Burning”. Maybe I’ll do that anyway, to attract more input. My PsA is primarily in my feet (I hate to add “for now” but I fear it is so). My feet BURN. Like, call the good looking guys in the fire engine, my feet are on fire! I’m betting I’m not the only one …
And speaking of side issues (we were, weren’t we? while I’ve been on the prednisone we all love o hate, my carpal tunnel issues seem to be on hold. Yes, and I had the surgery this summer. Didn’t help much, BTW, and it hurt like h#ll .
No, not every patient is the same, but there are definitely patterns. Trouble is, one family doc (that would be yours, ditto mine) never sees enough PsA patients to detect the patterns. And a rheumy doesn’t have time to chat about them, except maybe in passing, like “Yes, numbness, don’t worry it happens.”.
Thank goodness for the net, or we’d all be alone wondering!
The side issues are as numerous as the symptom variations for me even after 30 odd years of having this. I think the feet problems typify the variations we individually feel at different times and the variations between each of us. Feeling numbness and pain at the same time is weird and impossible to explain to a non-suffering doctor or friend. And it’s impossible to explain how at other times why my feet feel like they are going to spontaneously combust or have suddenly turned into inflexible, cold, leather blocks. And how can the pain in them be so excrutiating at times when they look so normal. No wonder we sometimes look for other than PsA causes.
Seenie said:
Hey there, Suzanne and everyone
It IS interesting the "side issues" which we all seem to have. This thread started with "Numbness". Yes, in fact, that's how I found this forum: of course I was self diagnosing, 'cuz my family doc was baffled by it. (Never discussed it with the rheumy, but will next time.).
I was thinking of starting a twin thread to "numbness", subject "Burning". Maybe I'll do that anyway, to attract more input. My PsA is primarily in my feet (I hate to add "for now" but I fear it is so). My feet BURN. Like, call the good looking guys in the fire engine, my feet are on fire! I'm betting I'm not the only one ...
And speaking of side issues (we were, weren't we? ;-) while I've been on the prednisone we all love o hate, my carpal tunnel issues seem to be on hold. Yes, and I had the surgery this summer. Didn't help much, BTW, and it hurt like h#ll .
No, not every patient is the same, but there are definitely patterns. Trouble is, one family doc (that would be yours, ditto mine) never sees enough PsA patients to detect the patterns. And a rheumy doesn't have time to chat about them, except maybe in passing, like "Yes, numbness, don't worry it happens.".
Thank goodness for the net, or we'd all be alone wondering!
Suzanne, didn't I see a post from you about your fingers locking up? (or was that someone else?) Anway, I'll post this here in case it was you. When my fingers began locking, my PT suggested silver ring splints. If you haven't seen them, you can view them here: http://www.silverringsplint.com/
They actually work without obstructing movement/use of your fingers. I can type quite easily with mine on. And, as an added attraction, they do not look "orthopedic." They look kind of like free-form 'art.' Some are made with gemstones in them. I do wear them when my fingers are having a flare, and folks have actually complimented my unusual rings! lol Worth taking a look at--IF you were the one talking about fingers locking up. Hope I haven't written this in the wrong place. :0 If I have posted in the wrong place would somebody let me know so I can copy this where it needs to be please?
I am, you will be happy to note, not grumpy today. It was a beautiful fall day and after school, I spent some time outdoors reading on campus (of all places). Enjoyed it very much. So, not grumpy, but VERY VERY angry at Uncle Arthur, who today is being a royal pain in the NECK. I HATE it when he goes after my neck!! So I probably will be grumpy again very soon! lolol
Hi Byrd! Glad you are having a better day! Yes it is me with the locking finger. Freaked me out! Still not sure what that’s about but it’s in my never-ending list of questions for my next rheumy appt. I will definitely look into those “rings”. A girl can never have enough jewelry in my opinion LOL!
could use them on my toes as well!! Thanks for the info and enjoy the rest
Of your day!
Suzanne
Byrd Feeder said:
Suzanne, didn’t I see a post from you about your fingers locking up? (or was that someone else?) Anway, I’ll post this here in case it was you. When my fingers began locking, my PT suggested silver ring splints. If you haven’t seen them, you can view them here: http://www.silverringsplint.com/
They actually work without obstructing movement/use of your fingers. I can type quite easily with mine on. And, as an added attraction, they do not look “orthopedic.” They look kind of like free-form ‘art.’ Some are made with gemstones in them. I do wear them when my fingers are having a flare, and folks have actually complimented my unusual rings! lol Worth taking a look at–IF you were the one talking about fingers locking up. Hope I haven’t written this in the wrong place. :0 If I have posted in the wrong place would somebody let me know so I can copy this where it needs to be please?
I am, you will be happy to note, not grumpy today. It was a beautiful fall day and after school, I spent some time outdoors reading on campus (of all places). Enjoyed it very much. So, not grumpy, but VERY VERY angry at Uncle Arthur, who today is being a royal pain in the NECK. I HATE it when he goes after my neck!! So I probably will be grumpy again very soon! lolol
I too have recently had similliar issue, mine is my right foot that has a pretty good size patch, and when I brush across it it feels tingly. I have recently been prescribed gabapentin and I see rheumy this monday, gonna ask if this is the cause as it is a new symptom. It’s kinda funny, I have dealt with psoriasis for ever and only in the last year or so do I feel as though I am falling completely apart. Smile though, it makes people wonder what you been up too
My EMG is scheduled for the 27th of this month, which is good, because over the last week I’ve developed additional numbness in other areas of the left foot and now it has migrated to the right foot. Never a dull moment!!
Hi Suzanne,The finger lock is called Trigger Finger. I get this also & asked doc about it as a last minute question( because it sounded weird) . He knew exactly what I was talking about. Mine comes & goes, but it is a strange sensation.
Suzanne Hall said:
My EMG is scheduled for the 27th of this month, which is good, because over the last week I've developed additional numbness in other areas of the left foot and now it has migrated to the right foot. Never a dull moment!! :-)
Hi Meg! I was doing some Internet searching and found “trigger finger”. I notice that pictures I
Found show it occurring at the 3rd IP joint ( the one closest to the palm) mine occurs at the 1st
DIP - closest to the fingernail. Does that matter? It’s on my “list”
For my next rheumy appointment, but all the information I receive here is greatly appreciated and definitely helps me when talking to my Dr. Happy Monday all!
meg said:
Hi Suzanne,The finger lock is called Trigger Finger. I get this also & asked doc about it as a last minute question( because it sounded weird) . He knew exactly what I was talking about. Mine comes & goes, but it is a strange sensation. Suzanne Hall said:
My EMG is scheduled for the 27th of this month, which is good, because over the last week I've developed additional numbness in other areas of the left foot and now it has migrated to the right foot. Never a dull moment!! :-)
Oh yes, the burning! That was what actually drove me to my doc in the first place - it felt like the bones in my fingers were on fire! It still took a couple of years before I got a diagnosis of PsA, but that's where all this fun and entertainment started for me. Thankfully, with MTX and Enbrel, that has mostly subsided now.
Seenie said:
Hey there, Suzanne and everyone
It IS interesting the "side issues" which we all seem to have. This thread started with "Numbness". Yes, in fact, that's how I found this forum: of course I was self diagnosing, 'cuz my family doc was baffled by it. (Never discussed it with the rheumy, but will next time.).
I was thinking of starting a twin thread to "numbness", subject "Burning". Maybe I'll do that anyway, to attract more input. My PsA is primarily in my feet (I hate to add "for now" but I fear it is so). My feet BURN. Like, call the good looking guys in the fire engine, my feet are on fire! I'm betting I'm not the only one ...
And speaking of side issues (we were, weren't we? ;-) while I've been on the prednisone we all love o hate, my carpal tunnel issues seem to be on hold. Yes, and I had the surgery this summer. Didn't help much, BTW, and it hurt like h#ll .
No, not every patient is the same, but there are definitely patterns. Trouble is, one family doc (that would be yours, ditto mine) never sees enough PsA patients to detect the patterns. And a rheumy doesn't have time to chat about them, except maybe in passing, like "Yes, numbness, don't worry it happens.".
Thank goodness for the net, or we'd all be alone wondering!
while I’ve been on the prednisone we all love o hate, my carpal tunnel issues seem to be on hold. Yes, and I had the surgery this summer. Didn’t help much, BTW, and it hurt like h#ll .