New member in Missouri!

Welcome Greetings and Introductions
1

Hi everyone - just signed on here a few hours ago, and got a diagnosis yesterday, so I'm a newbie in every sense of the word =) I'm almost 29, and been dealing with chronic pain for 4 years - lots of time questing around not knowing what was going on and trying to enjoy life between flares as much as possible. But me and my partner moved to Missouri in August, and as soon as the winter here hit me, I've been going downhill (I know arthritis is supposed to be sensitive to weather, right? That's a thing? but good grief . . .). Last month my neck and shoulder pain got out of control and was debilitating for about a week, and then last week I pretty much lost the use of my left arm. Long story short, got a primary care physician here in Missouri right quick, who after testing me positive for the HLA gene (after I insisted, after a google search of my symptoms) sent me off to a rheumy who so far I think I like and got me diagnosed with PsA and on prednisone (leading to Enbrel, he's saying, if i'm comfortable with it, next week). Wheee. =).

So I'm in the process of researching everything, now. Which led me here =). I want to try to walk that very fine line between honestly evaluating and then trusting a doctor (who seems, so far, to know what he's doing) and working hard to understand what I have and what I can do on my own. I'm also right now waiting for multiple x-rays which come in next week - I'm wondering what they'll show, because the pain in my neck has felt different lately and I'm a little scared about possible damage there already. I'm also nervous about being so young, with all of this, and that having it happen now might mean more serious damage over time.

Any insight/experience/thoughts/deep and abiding wisdom on any of this stuff would be DEEPLY appreciated =): a good diet for this, anyone else who had all of this starting up in their 20's, exercise routines that have worked for you, and early issues to watch out for!

Thanks so much everyone!!

2

Addie, how lucky you are. You got a diagnosis quickly (OK, you had to do the grunt work yourself, but so many of us have done that), you have a pro-active doctor who is going to treat you aggressively, and you’ve got us. wink

One member who will be excited to meet you is Fighter26. Look her up in Members, she’s in MO as well.

I hope your x-rays come back clean – inflammation doesn’t show on them, and with any luck, you’ll have caught this thing before the damage happens. Way back, one of our members said “Fear the disease, not the treatment”. So true!

As for diet, many people find that they feel best on a relatively low carbohydrate, anti-inflammatory diet. Some people have food “triggers”, others (like me) don’t. The bottom line on diet, and alternative therapies, is that it can reduce the symptoms of the disease, but not cure it. And don’t confuse symptom reduction with damage control. PsA can still be doing its insidious work in the background.

Best of luck, Addie! Let us know how those x-rays turn out.

Seenie

3

Hi Addie,

Welcome! Sorry you are here, but glad you found the group, as it is great :) I don't have much time right now but wanted to put in a welcome, and a suggestion to look up various things in the archives. There are many excellent previous discussions about specific meds, fatigue, etc.

I was dx with PsA when I was 10, so I know how tough it is going through your 20's when you have PsA. Everyone else is going along and your life will periodically stand still because of disease activity. Not fun!

4

Welcome to missouri and the site. Missouri weather is not the nicest to my PsA so hopefully luck will come your way. Diet wise I do proteins like wheat bread with peanut butter and healthy stuff for lunch like yogurt and fruit and a wheat sandwich and for dinner I spoil myself. Good luck

5

Thank you, Marietta! Everyone has been so kind so fast - you guys are great =) I've started sifting through previous discs and blogs like you suggested (that's actually what led me to this site because I was looking up effects of prednisone on PsA online), and Seenie messaged me almost the minute I signed up here with some information as well.

I really appreciate what you said about going through all of this in your 20's - I have a really supportive partner, and a good group of friends here in Missouri, so I need to count myself extremely lucky - but I'm worried, too, and I've already experienced enough of the chronic pain thing to know what there is to be scared about. Thoughts of things getting worse/the sheer unpredictability of this thing is what's putting me in a daze right now. I'm finding it hard to concentrate on virtually anything, or focus on my life/job and stuff I need to do right now. I guess that's got to be normal when you first get diagnosed (?). It's also been over a week not being able to use my left arm so it's super hard/impossible for me to do some things around our apartment - I've had to rely almost entirely on my partner to take care of things, and although he's been amazing, that maybe scares me most of all - being dependent?

Anyway thanks for the hi and hello even though you were in a rush - again really appreciate it! I'm also just blurting things out here because I can =), so no worries if you can't respond quickly! I just appreciate you being on the other end of the line.


Marietta said:

Hi Addie,

Welcome! Sorry you are here, but glad you found the group, as it is great :) I don't have much time right now but wanted to put in a welcome, and a suggestion to look up various things in the archives. There are many excellent previous discussions about specific meds, fatigue, etc.

I was dx with PsA when I was 10, so I know how tough it is going through your 20's when you have PsA. Everyone else is going along and your life will periodically stand still because of disease activity. Not fun!

6

Thanks, Fighter! Yeah - I liked Missouri when we first got here, but I gotta say the winter thing is NOT agreeing with me!!! Is it temp. for you that does it? And thanks for the diet tips ;)

Fighter26 said:

Welcome to missouri and the site. Missouri weather is not the nicest to my PsA so hopefully luck will come your way. Diet wise I do proteins like wheat bread with peanut butter and healthy stuff for lunch like yogurt and fruit and a wheat sandwich and for dinner I spoil myself. Good luck
7

Yes we have been having a very crazy winter this year and all these snow storms take their toll. My prednisone has been helping me through it so it may help you.

8

Hi AddyBlue, welcome.

Just wanted to say both my shoulders are bady affected and I've had the whole loss of use thing too in my right shoulder. An ice compress and rest helped but eventually I needed an ultrasound guided steroid injection right into the joint and bursa to get it to settle. It is not an uncomfy procedure, they include some local anaesthetic, and I got instant relief and around 3 - 4 weeks with full movement and no pain before it returned to 'normal' discomfort levels. But I'd have it done again and not wait so long suffering next time either. Something you could ask your docs about if you need to.

9

AddyBlue said:

I've had to rely almost entirely on my partner to take care of things, and although he's been amazing, that maybe scares me most of all - being dependent?

Anyway thanks for the hi and hello even though you were in a rush - again really appreciate it! I'm also just blurting things out here because I can =), so no worries if you can't respond quickly! I just appreciate you being on the other end of the line.

Hi Addy,

I've struggled with this too. I met my husband in college and we've been together over 20 years. Since I was dx with PsA at age 10, dealing with it has always been part of our relationship. Relationships CAN work with this disease, but it takes a lot of communication between both partners. The reality is that you will be dependent on your partner some of the time. It's just how it is. He will probably need to do more around the house (cooking, cleaning, grocery shopping, errands) since usually that is a big area affected by PsA. Once you've come home from work there isn't a lot left for those "extras". My husband never minded this, as these things are pretty clear cut jobs (Grocery store: buy things on list. Vacuum: run it over the carpet. Etc.)

Focus the energy you DO have on doing fun things together, even if it is just snuggling while you watch Netflix. You probably won't have the energy to keep up on all the things you used to do, if you were very athletic or active. You can cultivate new activities to do with your partner that are fun, but easier on you.

If you have trouble keeping up with friends (a big deal in your 20's!) have them come to you. Host get together at your house, and have it be potluck. You get to see your friends AND stay in your comfy home with all your meds / heating pads / etc. available to you.

I'm going to stop babbling now! Too many Girl Scout Cookies are giving me a sugar high :)


10

Thanks for the input Jules! Yeah about 4 days on prednisone right now and no real difference in the use of my hand - in fact swelling seems to have gotten worse? Don't think it's an allergic reaction or anything but doesn't seem to be doing much good. Will talk to my rheumy on Wed. when I see him.



Jules said:

Hi AddyBlue, welcome.

Just wanted to say both my shoulders are bady affected and I've had the whole loss of use thing too in my right shoulder. An ice compress and rest helped but eventually I needed an ultrasound guided steroid injection right into the joint and bursa to get it to settle. It is not an uncomfy procedure, they include some local anaesthetic, and I got instant relief and around 3 - 4 weeks with full movement and no pain before it returned to 'normal' discomfort levels. But I'd have it done again and not wait so long suffering next time either. Something you could ask your docs about if you need to.

11

Really great advice - thanks so much for that. I've already learned pretty rapidly that communicating with him is KEY - actually telling him clearly how I'm feeling at any given moment if things get worse, rather than letting him figure it out our jump to wrong conclusions. He seems to have adjusted extremely rapidly to certain tasks that I can't do - I gotta say he's adjusted better than I have. But in terms of being careful to preserve my energy for us time, and not overdoing things because I get frustrated at feeling helpless - thanks so much for that bit of important perspective.

Marietta said:

AddyBlue said:

I've had to rely almost entirely on my partner to take care of things, and although he's been amazing, that maybe scares me most of all - being dependent?

Anyway thanks for the hi and hello even though you were in a rush - again really appreciate it! I'm also just blurting things out here because I can =), so no worries if you can't respond quickly! I just appreciate you being on the other end of the line.

Hi Addy,

I've struggled with this too. I met my husband in college and we've been together over 20 years. Since I was dx with PsA at age 10, dealing with it has always been part of our relationship. Relationships CAN work with this disease, but it takes a lot of communication between both partners. The reality is that you will be dependent on your partner some of the time. It's just how it is. He will probably need to do more around the house (cooking, cleaning, grocery shopping, errands) since usually that is a big area affected by PsA. Once you've come home from work there isn't a lot left for those "extras". My husband never minded this, as these things are pretty clear cut jobs (Grocery store: buy things on list. Vacuum: run it over the carpet. Etc.)

Focus the energy you DO have on doing fun things together, even if it is just snuggling while you watch Netflix. You probably won't have the energy to keep up on all the things you used to do, if you were very athletic or active. You can cultivate new activities to do with your partner that are fun, but easier on you.

If you have trouble keeping up with friends (a big deal in your 20's!) have them come to you. Host get together at your house, and have it be potluck. You get to see your friends AND stay in your comfy home with all your meds / heating pads / etc. available to you.

I'm going to stop babbling now! Too many Girl Scout Cookies are giving me a sugar high :)


12

Yes! As soon as my left arm settles down a bit and the xrays come back next week along with a more long term care geared conversation with my rheumy, the first thing I want to do is start figuring out physical activities that really work for me and make me feel great. My partner loves tai chi, and I think I may get into that with him!

I deeply appreciate the candor about the ups and downs emotionally - it does still make me nervous because the past 4 years have given me a taste of the downs often enough to scare me. But all of you are already helping me feel less alone with this - hell, having a diagnosis at all has done wonders - and my partner has been amazing too. Trying to ride the good emotional place I'm in right now as far as it will take me!

sybil said:

Hi Addie! You don't hang around do you! It took me quite a while to find this site and even longer to work out things like the 'fine line' you describe but you've cottoned on straight away.

Over time I've squirrelled away certain pieces of wisdom from this site & key amongst those are 'fear the disease not the meds', as Seenie mentioned, and also that the things we do ourselves can have a huge impact alongside the meds. I was hooked on exercise before diagnosis - of the regular variety rather than anything extreme - and I've continued swimming, hill-walking, doing tai chi etc. as much as I possibly can. And I try to go for the best possible diet I can afford (and be bothered to prepare) along the lines of fish, organic vegetables a-plenty, the 'best' (I know this is debatable) oils, pulses etc. etc.

Another point often made on here is that a positive attitude counts for a lot. Well, that seems obvious ...... they say it about every illness but I now really think there's something in that for PsA.

I constantly fail to live up to these tenets - especially the positive attitude - but basically they are in place & I keep trying. And although some aspects of my disease remain resistant to treatment so far, my mobility, ease of movement and energy levels are now pretty damn good.

Two years ago when I was diagnosed it looked like I was going to have to acclimatise to a very different way of life, I really thought I was stuffed. It takes a while, but so often there's a burst of light at the end of the tunnel .... brighter than you'd think at this point.

13

Hi Addy,

Welcome ! This is a great group to get info and support and sometimes some giggles :-) I'm glad you joined us and hope to see you here often.

Frances

14

Hiya Addy. Welcome to the circus! (I'm the comic relief). PsA is an insidious, terrifying, and frequently misunderstood monster...but it can be tamed. I remember the overwhelming relief I felt when I finally got a diagnosis after suffering from strange migrating pain for many many years. So far you seem to have a terrific attitude, and that is 50% of the battle.

I'm so very glad you found us. I have learned so much from the people here, but my very best piece of wisdom is that if there is something hinky going on physically, it is probably related to the PsA, and you should document any weird symptoms in some kind of journal (and take pictures!! Sometimes weird symptoms miraculously disappear when you walk into the doctor's office) and take it with you to Rheumy appointments. You'll be amazed at how everything is connected.

I'm glad you have a supportive partner, as that has been my saving grace. Whenever I'm feeling grouchy, or mad, or hurting, etc. etc., he is always there, always willing to rub lotion on my back, and always believing in me and encouraging me to do what I can, but not to overdo.

So pardon my wandering monologue, but welcome. The folks here are incredibly compassionate, amazingly knowledgeable, and downright awesome. Most importantly, no matter what you are experiencing, someone here will have gone through it, known someone who has, or are headed down the same path. We will hold you up when you need it, and lean on you when we need it.

15

Update:

Hi everyone - thanks so much to everybody who's replied to my initial foray on here - it's made me feel so much less alone with this, and better able to handle whatever happens.

I wanted to give you guys an update on things and ask a few additional questions! So the x-rays from my rheumy came back, and it looks like I have significant sacroiiliitis in both joints, with possibly more extensive damage there though my rheumy said he thought it was a bit less significant than the radiologist said (an odd thing for him to share with me - thoughts?). The SI joint thing really doesn't surprise me, as it's the issue I've been dealing with primarily for 4 years - the good part about that is that I've had very little pain there over the past year. The other result of the x-ray that's more worrying right now is that there is obvious squaring of the thoracic vertebrae - which I understand as the beginnings of inflammation eroding the bone at those points. He said as well that that my neck seemed "too straight" but thought that that may have been because I was in excessive pain at the time of the x-ray, so I was keeping myself rigid, which is true. That worried me a bit though because I have had severe neck pain during flares that has felt deeper than tissue - I wanted to see if others have had cervical spine problems, how they manifested themselves, and when it might be time for me to insist on an MRI. I did ask him whether he thought an MRI was necessary for my neck region yet, and he wanted to hold off until I start Enbrel to see if that helps. I'm fine with that for now, as when I'm not flaring the neck is not bad, but I'm not afraid to insist if it gets to that point. The upshot of everything in terms of my diagnosis, after x-rays and thorough examination, is that he thinks I have psoriatic arthritis with secondary ankylosing spondylitis (which based on my symptoms was what I thought I had had from the beginning).

So right now I'm in the process of battling my insurance company - in concert with the rheumy, who is gung-ho about the battling and seems positive about getting results - for the Enbrel. I'm hoping there may be movement on that this week.

My final question for you all is about my left arm. Up until 3 weeks ago, I had never had any peripheral symptoms besides the tendon pain in my heels, ever - all the pain I had was concentrated in my spine. Then this left arm thing hit - the rheumy identified major joint pain in the wrist when I saw him first, and it's also in the elbow and up into the muscles/tendons of the arm. My issue is that he got me on prednisone quickly to bring down the inflammation, which it did. Now that I'm phasing out the dose in anticipation of Enbrel, though, as my rheumy told me to, the pain in the arm seems to be coming back. If I need to I can up the dose of prednisone again for the pain though I'd rather not, but my concern is sort of bigger than that. I've never had pain that was persistent like this without drugs between flares. Does this mean that there is possibly damage in my left arm that I need to get x-rayed/MRI'd as soon as possible? Or is this simply a new pain point in the disease that I have to deal with? I imagine a lot of you will tell me to ask my doc, which I def. will, but I wanted to ask about your experiences too. When is a new, persistent pain symptom something you just deal with/learn to expect, and when is it something you should get checked for real damage?

Wheee. Thanks so much in advance everyone. I've been swinging in terms of mood a lot lately (possibly the prednisone is having fun with me there, too), but I'm making it - and I have a fabulous therapist who's been seeing me for years ;) Any and all advice or words of wisdom are hugely appreciated!!! Best to all of you.

16

Thanks much for the advice, tmbrwolf, and for the welcome =) I will keep a careful running list of my symptoms, though they aren't too circus-like yet thank god, and make sure I tell the rheumy about them. Here's to taming . . .



tmbrwolf329 said:

Hiya Addy. Welcome to the circus! (I'm the comic relief). PsA is an insidious, terrifying, and frequently misunderstood monster...but it can be tamed. I remember the overwhelming relief I felt when I finally got a diagnosis after suffering from strange migrating pain for many many years. So far you seem to have a terrific attitude, and that is 50% of the battle.

I'm so very glad you found us. I have learned so much from the people here, but my very best piece of wisdom is that if there is something hinky going on physically, it is probably related to the PsA, and you should document any weird symptoms in some kind of journal (and take pictures!! Sometimes weird symptoms miraculously disappear when you walk into the doctor's office) and take it with you to Rheumy appointments. You'll be amazed at how everything is connected.

I'm glad you have a supportive partner, as that has been my saving grace. Whenever I'm feeling grouchy, or mad, or hurting, etc. etc., he is always there, always willing to rub lotion on my back, and always believing in me and encouraging me to do what I can, but not to overdo.

So pardon my wandering monologue, but welcome. The folks here are incredibly compassionate, amazingly knowledgeable, and downright awesome. Most importantly, no matter what you are experiencing, someone here will have gone through it, known someone who has, or are headed down the same path. We will hold you up when you need it, and lean on you when we need it.

17

Thank you, Frances! The giggles are there for me already, and it's so awesome to get them here =)

Frances said:

Hi Addy,

Welcome ! This is a great group to get info and support and sometimes some giggles :-) I'm glad you joined us and hope to see you here often.

Frances

18

I'm sorry that I can't give you advice on your issues - don't have the knowledge in those areas. But I will warn you about decreasing the prednisone VERY slowly or you'll have a horrible "rebound" effect. It happened to me and it was extremely painful. The docs I've seen don't seem to be sensitive to this issue and have told me to taper off too quickly and told me it wouldn't be a problem - not true. You really need to taper VERY slowly to avoid pain. Let me know if you have more questions about tapering off prednisone.

19

Thank you for the warning - my doc actually seems extremely careful about that, and I'm tapering very slowly - I have read about that effect, so maybe that's part of why the pain feels like it's "coming back" even though I'm being careful.

Frances said:

I'm sorry that I can't give you advice on your issues - don't have the knowledge in those areas. But I will warn you about decreasing the prednisone VERY slowly or you'll have a horrible "rebound" effect. It happened to me and it was extremely painful. The docs I've seen don't seem to be sensitive to this issue and have told me to taper off too quickly and told me it wouldn't be a problem - not true. You really need to taper VERY slowly to avoid pain. Let me know if you have more questions about tapering off prednisone.

20

I'm glad your doc is being very careful about tapering, mine was not. He's no longer my doc either.

AddyBlue said:

Thank you for the warning - my doc actually seems extremely careful about that, and I'm tapering very slowly - I have read about that effect, so maybe that's part of why the pain feels like it's "coming back" even though I'm being careful.

Frances said:

I'm sorry that I can't give you advice on your issues - don't have the knowledge in those areas. But I will warn you about decreasing the prednisone VERY slowly or you'll have a horrible "rebound" effect. It happened to me and it was extremely painful. The docs I've seen don't seem to be sensitive to this issue and have told me to taper off too quickly and told me it wouldn't be a problem - not true. You really need to taper VERY slowly to avoid pain. Let me know if you have more questions about tapering off prednisone.