Good luck JW. I am starting the anti seizure med and have an appointment coming up with a neurologist. My rheumatologist also upped my methotrexate. Hope it helps and best of health to all of us not feeling well.
JW, it's brilliant that you're considering the Toronto clinic. You've had PsA a long time haven't you? My hunch is that it tends to become more complex over time though perhaps that does not necessarily equate with less treatable. Things were pretty dire by the time I was diagnosed and I'm sure I had PsA for many years beforehand but I'm doing really well these days. I too think that PsA requires a rheumatologist who is really interested in it and very aware of what differentiates it from RA etc.
I honestly think that changing from an okay rheumy to an excellent one can have a tremendous effect on our lives.
I’m so sorry that you have that pain. It is also my most predominant pain. I went in last week and told my Rheum about the forearms and the enthesitis/tendinitis. He said they win the war on joint damage but not too good on the inflamed tendons. No one understands when it hurts to move or not move. I injured myself Jan 1 moving the pot of lucky black eyed peas on the stove that day. I’m still paying for it. You have to get help! I’m getting a cook housekeeper in. There’s really no option and you just can’t let an injury happen or flame up your nerves since it doesn’t get better. All the best to you.
Thank-you Scienceteach. I hope your new treatment(s) helps. Please let us know how things go. I'm also curious to know what anti-seizure med you're taking and how well it works. Best of luck to you.
Scienceteach said:
Good luck JW. I am starting the anti seizure med and have an appointment coming up with a neurologist. My rheumatologist also upped my methotrexate. Hope it helps and best of health to all of us not feeling well.
Hi Sybil,
Seenie's letters and shared information have helped me come to that decision. As Seenie said, we are lucky in this part of Canada (eastern ontario) to have a specialized, highly regarded PsA Clinic (Toronto). It's about 3-4 hours away but it sounds like it will be well worth it. I'm still gathering info and I have left a message with them.
I'm very glad to hear that you are doing better, it gives me hope that I may be able to get the treatment I need and better manage this disease. I'm just wondering how best to approach my Rheum about this consult without insulting him. I also need to address the pain and possible medication to manage that aspect of this flare. We have a good relationship, he's also very nice and easy to talk to so I'm hoping for the best.
Take care and thanks : )
Sybil said:
JW, it's brilliant that you're considering the Toronto clinic. You've had PsA a long time haven't you? My hunch is that it tends to become more complex over time though perhaps that does not necessarily equate with less treatable. Things were pretty dire by the time I was diagnosed and I'm sure I had PsA for many years beforehand but I'm doing really well these days. I too think that PsA requires a rheumatologist who is really interested in it and very aware of what differentiates it from RA etc.
I honestly think that changing from an okay rheumy to an excellent one can have a tremendous effect on our lives.
JW-- glad you've gotten some great advice and have been able to take some action. I hope you get in to see the docs in Toronto. Dream Team for sure. Raynauds is apparently pretty common with PsA too and I take nifedipine (calcium channel blocker) for that in the cold weather so I don't get cold feet and hands or "empty" fingers and toes.
And Scienceteach--I take gabapentin for neuropathy. It's an anti-seizure med and it works wonders. I no longer get profound tingling and nerve shocks in my feet and legs so I get MUCH MUCH MUCH better sleep.
JW said:
Thank-you Scienceteach. I hope your new treatment(s) helps. Please let us know how things go. I'm also curious to know what anti-seizure med you're taking and how well it works. Best of luck to you.
Scienceteach said:Good luck JW. I am starting the anti seizure med and have an appointment coming up with a neurologist. My rheumatologist also upped my methotrexate. Hope it helps and best of health to all of us not feeling well.
Sorry to hear you're dealing with this too Dot. I have found the same: if we look relatively well, people don't understand why we have difficulty, even some Rheums. This disease is rare as you know and often invisible. I know that some people judge me negatively without having a clue what I'm dealing with, even family members.
It's not easy to accept but I have been reaching out and getting support. I need to do more, but one day at a time. I'm glad I re-connected here. So many supportive people with invaluable knowledge, it makes a world of difference
I hope things get better for you, soon! Take care.
Dot said:
I'm so sorry that you have that pain. It is also my most predominant pain. I went in last week and told my Rheum about the forearms and the enthesitis/tendinitis. He said they win the war on joint damage but not too good on the inflamed tendons. No one understands when it hurts to move or not move. I injured myself Jan 1 moving the pot of lucky black eyed peas on the stove that day. I'm still paying for it. You have to get help! I'm getting a cook housekeeper in. There's really no option and you just can't let an injury happen or flame up your nerves since it doesn't get better. All the best to you.
I pick it up tomorrow at the pharmacy. It begins with a g something like Garber in something like that. I am worried about some side effects but aren't we all with all the stuff we are on. Crossed fingers that it helps. Hope you are doing better.
JW said:
Thank-you Scienceteach. I hope your new treatment(s) helps. Please let us know how things go. I'm also curious to know what anti-seizure med you're taking and how well it works. Best of luck to you.
Scienceteach said:Good luck JW. I am starting the anti seizure med and have an appointment coming up with a neurologist. My rheumatologist also upped my methotrexate. Hope it helps and best of health to all of us not feeling well.
Just saw this message that is the med the dr. is having me start. It is mostly because he says I am having a syndrome of nerve related pain and icy cold extremeties. A syndrome that is nerve related and painfull.
janeatiu said:
JW-- glad you've gotten some great advice and have been able to take some action. I hope you get in to see the docs in Toronto. Dream Team for sure. Raynauds is apparently pretty common with PsA too and I take nifedipine (calcium channel blocker) for that in the cold weather so I don't get cold feet and hands or "empty" fingers and toes.
And Scienceteach--I take gabapentin for neuropathy. It's an anti-seizure med and it works wonders. I no longer get profound tingling and nerve shocks in my feet and legs so I get MUCH MUCH MUCH better sleep.
Mostly
JW said:
Thank-you Scienceteach. I hope your new treatment(s) helps. Please let us know how things go. I'm also curious to know what anti-seizure med you're taking and how well it works. Best of luck to you.
Scienceteach said:Good luck JW. I am starting the anti seizure med and have an appointment coming up with a neurologist. My rheumatologist also upped my methotrexate. Hope it helps and best of health to all of us not feeling well.
JW you said it well, people don't understand when we look seemingly well. I find most people, just don't understand.
JW said:
Sorry to hear you're dealing with this too Dot. I have found the same: if we look relatively well, people don't understand why we have difficulty, even some Rheums. This disease is rare as you know and often invisible. I know that some people judge me negatively without having a clue what I'm dealing with, even family members.It's not easy to accept but I have been reaching out and getting support. I need to do more, but one day at a time. I'm glad I re-connected here. So many supportive people with invaluable knowledge, it makes a world of difference
I hope things get better for you, soon! Take care.
Dot said:
I'm so sorry that you have that pain. It is also my most predominant pain. I went in last week and told my Rheum about the forearms and the enthesitis/tendinitis. He said they win the war on joint damage but not too good on the inflamed tendons. No one understands when it hurts to move or not move. I injured myself Jan 1 moving the pot of lucky black eyed peas on the stove that day. I'm still paying for it. You have to get help! I'm getting a cook housekeeper in. There's really no option and you just can't let an injury happen or flame up your nerves since it doesn't get better. All the best to you.
It is hard for others to understand and it gets tiring hearing but you look good. Some days I almost wish I look as bad as I feel. Just so people may get it more.
JW, it’s quite possible that your doctor will be pleased to refer you: the clinic will report back to your rheumatologist in a consructive way. They will help him with treatment decisions which he may be finding difficult. Remember that your rheumatologist wants to do the right thing for you, and these people will support him in that. This is in no way “going behind the back” of your rheumie. The clinic needs a wide range of patients so that they are working with a large research sample, so I’m pretty sure that they work hard to make the process positive and constructive for everyone. It certainly is like that from the patient’s point of view.
JW said:
Hi Sybil,
Seenie’s letters and shared information have helped me come to that decision. As Seenie said, we are lucky in this part of Canada (eastern ontario) to have a specialized, highly regarded PsA Clinic (Toronto). It’s about 3-4 hours away but it sounds like it will be well worth it. I’m still gathering info and I have left a message with them.
I’m very glad to hear that you are doing better, it gives me hope that I may be able to get the treatment I need and better manage this disease. I’m just wondering how best to approach my Rheum about this consult without insulting him. I also need to address the pain and possible medication to manage that aspect of this flare. We have a good relationship, he’s also very nice and easy to talk to so I’m hoping for the best.
Take care and thanks : )
Sybil said:JW, it’s brilliant that you’re considering the Toronto clinic. You’ve had PsA a long time haven’t you? My hunch is that it tends to become more complex over time though perhaps that does not necessarily equate with less treatable. Things were pretty dire by the time I was diagnosed and I’m sure I had PsA for many years beforehand but I’m doing really well these days. I too think that PsA requires a rheumatologist who is really interested in it and very aware of what differentiates it from RA etc.
I honestly think that changing from an okay rheumy to an excellent one can have a tremendous effect on our lives.
You nailed that one, Scienceteach! Sometimes I feel like getting a custom shirt printed. It would say “If you only knew!”
Scienceteach said:
It is hard for others to understand and it gets tiring hearing but you look good. Some days I almost wish I look as bad as I feel. Just so people may get it more.
Jw I can concur with seenie - she directed me to the toronto clinic and they are, by far, the best team I have met (in canada!) they really are thorough and do everything for you - complete x rays, ultrasounds, bloods, dealing with insurance companies - omg - I see dr chandran and he is sooo nice and really knowledgeable. I was there not long ago and I think for new patients they’re booking 3-4 months away but if you can get referred as urgent it may be quicker - well worth the wait but given your circs I would ask for an urgent appt or even call for a cancellation. Hope you feel better soon xx
I think this exactly part of what I'm dealing with. The nerve pain. it's been driving me crazy - hands, feet, arms and starting in legs. I'm wondering if we're all dealing with the same thing Scienceteach, the nerve syndrome you mentioned. Janeatiu described it well, the crazy tingling and pain in my case. You're both taking gabapentin .. and that may be something I need as well. I'm glad to hear it really helped janeatiu, because it's been really awful to deal with. I don't know about you, but mine waxes and wanes depending on activity level and body position. Btw, I too take nifedipine for my Raynauds. Could that be the syndrome you mentioned Scienceteach? More research, sometimes I can't help it.
Thanks you both for the encouragement. I too hope we all feel better!
Scienceteach said:
Just saw this message that is the med the dr. is having me start. It is mostly because he says I am having a syndrome of nerve related pain and icy cold extremeties. A syndrome that is nerve related and painfull.
janeatiu said:JW-- glad you've gotten some great advice and have been able to take some action. I hope you get in to see the docs in Toronto. Dream Team for sure. Raynauds is apparently pretty common with PsA too and I take nifedipine (calcium channel blocker) for that in the cold weather so I don't get cold feet and hands or "empty" fingers and toes.
And Scienceteach--I take gabapentin for neuropathy. It's an anti-seizure med and it works wonders. I no longer get profound tingling and nerve shocks in my feet and legs so I get MUCH MUCH MUCH better sleep.
Mostly
JW said:
Thank-you Scienceteach. I hope your new treatment(s) helps. Please let us know how things go. I'm also curious to know what anti-seizure med you're taking and how well it works. Best of luck to you.
Scienceteach said:Good luck JW. I am starting the anti seizure med and have an appointment coming up with a neurologist. My rheumatologist also upped my methotrexate. Hope it helps and best of health to all of us not feeling well.
That makes good sense Seenie, and I really don't anticipate any problems. I get concerned because my former Rheum of 15 years was miserable to deal with. My new Dr is very good that way, and I don't see the ego issues that the previous joker had.
I also called the clinic and spoke to Angela as you suggested. She was very helpful and gave me the fax # for the referral. With all the good things I've heard about this treatment team (thank-you Golfnut and Seenie for sharing your positive experiences with them), I'm now more hopeful that things will get better. This disease can drive us crazy, especially when not well contolled and treated. I'm almost there lol!
Golfnut, that's exactly what the Clinic told me when we spoke. She said that if my referral indicated urgency, I should get an appointment in a timely fashion. I'll make sure and relay this to my Rheum on Tuesday.
I'm really glad I got back here. So many helpful & supportive people with a vast knowledge and experience. I don't always say this, but thank God for the internet !
JW, it's quite possible that your doctor will be pleased to refer you: the clinic will report back to your rheumatologist in a consructive way. They will help him with treatment decisions which he may be finding difficult. Remember that your rheumatologist wants to do the right thing for you, and these people will support him in that. This is in no way "going behind the back" of your rheumie. The clinic needs a wide range of patients so that they are working with a large research sample, so I'm pretty sure that they work hard to make the process positive and constructive for everyone. It certainly is like that from the patient's point of view.
JW said:Hi Sybil,
Seenie's letters and shared information have helped me come to that decision. As Seenie said, we are lucky in this part of Canada (eastern ontario) to have a specialized, highly regarded PsA Clinic (Toronto). It's about 3-4 hours away but it sounds like it will be well worth it. I'm still gathering info and I have left a message with them.
I'm very glad to hear that you are doing better, it gives me hope that I may be able to get the treatment I need and better manage this disease. I'm just wondering how best to approach my Rheum about this consult without insulting him. I also need to address the pain and possible medication to manage that aspect of this flare. We have a good relationship, he's also very nice and easy to talk to so I'm hoping for the best.
Take care and thanks : )
Sybil said:JW, it's brilliant that you're considering the Toronto clinic. You've had PsA a long time haven't you? My hunch is that it tends to become more complex over time though perhaps that does not necessarily equate with less treatable. Things were pretty dire by the time I was diagnosed and I'm sure I had PsA for many years beforehand but I'm doing really well these days. I too think that PsA requires a rheumatologist who is really interested in it and very aware of what differentiates it from RA etc.
I honestly think that changing from an okay rheumy to an excellent one can have a tremendous effect on our lives.
I'm thinking that neuropathy can be due to permanently damaged nerves but can also be a temporary or intermittent problem due to inflammation around joints compressing nerves. For me the worst thing by far is the electric shock sensation which comes in pulses, one shock about every 30 seconds. That is a form of torture I swear. But these days it only happens when my ankle swells & that's an occasional thing. If it was a frequent occurrence I'd want that gabapentin.
It sounds like you have some experience dealing with this Sybil. I was thinking something similar about inflammation affecting the nerves: my right hand/wrist/arm, the most inflammed area right now, has the most intense neuropathy symptoms.
I've had nerve conduction tests in my hand/arms from the Neurologist and he said things were fine.
I know about the torture Sybil. Sorry to hear you've dealt with that also. Were you taking Gabapentin when the nerve pain was bad? You're the fourth person I've heard mention it.
JW, I think myself fortunate, I've got a fair few niggling things going on that are not too bad at all & I'd put the neuropathy in that category. I've had the night-long shocks about 8 times I suppose, with many months in between. It's just that they made a lasting impression! The other symptoms are very mild and I've not needed gabapentin yet. Your discussion has reminded me that every now & then I need to take a look at what's in the bin I've labelled 'Random PsA Stuff'.
I've been looking for reliable information about neuropathy and found an article cited by the BMJ (British Medical Journal) which should be trustworthy. I'll give you the link if you like. It focuses on diabetic neuropathy but states: 'Neuropathy is a complication of a number of different medical conditions and is a common condition.' I personally find that quite reassuring. Connective tissue diseases such as RA are in the list of causes.
I would guess that many of us have some degree of neuropathy and what matters most is how badly it affects a person. I imagine you were relieved by the outcome of the nerve conduction tests at least.
I went on gabapentin a few months ago. I have had random neuropathies for a few years now. Some of them are clearly related to inflammation, such as in my thumb going into my forearm. Others appear to be truly random. So why now? I developed neuropathy in my feet about a year ago, horrible when it first appeared. It got better initially, but had more recently reached the point where the neuropathy was changing what I was willing/able to do. My feet are more comfortable from the neuropathy, although not perfect. More importantly, the neuropathy is no longer getting in my way.