Hi everyone. I just joined this group in the hopes of hearing how others deal with this beautiful thing called PsA. I was diagnosed less than a year ago, though I had shown symptoms for quite a while. The diagnosis did not come as a surprise as my mother has PsA and it started for her around the same age as it did for me. What was a shocking revelation was how hard it is to live with at times. My pain is well controlled with Sulfasalazine, but the overwhelming fatigue is what is really getting to me. It just continues to get worse and it's really interfering with my life. I go to work everyday and that's about all I can manage. I'm just so exhausted all the time!!! I know it is really concerning my boyfriend. We plan to marry within the next year and start trying to get pregnant immediately (we both have been married before and he has a ten year old son). I have heard, and my mother has said the same, that symptoms tend to disappear during pregnancy, so the pregnancy itself isn't what worries me. It's the actual child raising. We plan to only have one and plan for me to be a stay at home mom. This is really what I want to do...regardless of the fact that I don't think I could handle work and parenting. God bless all you who do that every single day! I am in awe of you. Anyway, my boyfriend has mentioned several times that we could get a nanny to help me. I don't want to do that...especially if I'm at home all the time! I want to be a good mom....not one that can't participate in play and I don't want to need the daily naps I already need. I work full-time now but in retail and full-time in retail is only 30 hours....so how am I so exhausted!?!?! I'm just getting really frustrated and worried about how much this fatigue is impacting my life and terrified of what kind of mom it will make me. I remember my mom having to lie down a lot when I was young, but she was working full-time as a kindergarten teacher and raising two of us (and my brother was a handful haha, I was the good child ;). I don't remember her missing anything or not able to play with us because she was too tired. The only thing she couldn't do was sit on the floor because it was almost impossible for her to get back up. I just want to be a great mom!!! Does anyone have any suggestions? Please help!!!!
Welcome!!!
I'm a mom to five homeschooled children. I've had PsA, we suspect, since childhood, but wasn't diagnosed until age 36, AFTER having my five kids! I didn't start treatment until around a year after diagnosis due to other health issues. It definitely can be done. These days I have my own kids (ages 6, 9, 12, 14, and 16 ...9 and 16 year olds have Aspergers), and seem to be the drop off point for friends' kids as needed (and if I"m up for it), so usually we have an extra child or three, usually toddlers/preschoolers.
For me, it's finding a balance and discovering what works for you. With all my kids, I practiced babywearing (carrying baby in a sling or wrap), which helped a great deal with carrying and caring for baby. My kids have always loved climbing in bed with me to read or play cards/ cars/ blocks/ trains/whatever. I found it a true blessing to have a community of friends who would help each other out with cleaning, cooking, etc. as needed. Making double or triple batches of meals and freezing the "extras" for future dinners helped a lot. We continue to have quiet time every day - it started out as naptime for my kids, and now is just an hour and a half in the afternoon when everyone rests or quietly entertains themselves. Breastfeeding was actually a great thing for me, as it kind of made me sit down and relax every couple hours .... and the oxytocin and prolactin were a great health benefit as well! ;)
I was diagnosed when my second child was almost a year old. He napped until he was about 5 years old, and I loved every minute of it! Making it through the day without napping was impossible, so we would nap together. I also used babywearing as it made it easier to get things done, and made holding the baby/toddler easier. I was able to put off heavy duty meds until he was 5 and a half years old, so breastfeeding was not an issue.
The secret to making it work, I found, was to give my kids focused play time, and that would buy me chunks of independent play time. So I would sit with them for 15-30 minutes, and that would buy me an hour, sometimes of me just closing my eyes and trying to gather up energy. If you want kids, you'll make it work.
Thank you both so much for your responses. What amazing women you are! You have given me new ideas and hope that I will be able to be a good mom, which is what I want more than anything. I will share your responses with my boyfriend to hopefully alleviate some of his concerns. He's so good to me and worries about me so much. I can't thank you enough for your words of encouragement!
Hi, I’m a mum of 3. Iv was only diagnosed a few months ago so I’m still very new to this. My kids are 8,6 & 21months. I’d say they are what keep me going even tho some days I want to curl up & never move again. My knees & feet are the worse so I can’t get down to play but we find ways round it. I’m sure you will be a fabulous mummy & will finds ways to make it work x
I'm finding myself getting very depressed. My boyfriend suggested today that we don't have a child. I know he means well and worries about me but this is not what I want. I just feel I'm missing so much because I'm so tired. What about diet? Does anyone have anyone have suggestions on foods to stay away from....foods to bulk up on? I hate feeling sorry for myself and complaining...so I really hate how I'm feeling right now. Thank you for all your feedback.
PG, depression seems to be one of the ugly things that comes along with PsA, and many of us have had our battles with it. Combine that with dead tired, and you’ve got a really toxic mix. Maybe it’s time for you to have a good talk to your rheumatologist about re-thinking your treatment.
There has been quite a lot posted on this board about diet and its potential for giving you some symptom relief. Check out the complementary therapy section for past discussions, or use the search bar at the very top right of this page. Some people find that dietary modifications really help, others not so much. Myself, I feel best when I limit my carbohydrate intake. But we’re all different.
When you are very tired and depressed is not the time to be thinking about major life decision. Down the road, with the right treatment, you may be surprised at how well you feel. You are fortunate to have a partner who worries about you and means so well, but this isn’t the time to feel the pressure of major decisions.
Here’s some reading that you may find helpful, or be able to relate to:
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/6339595:Topic:167340
Hang in there, PG. There are better days ahead.
Thank you so very much for sharing this article. I also passed it on to my boyfriend. I know I am truly blessed to have him. Thought at times I get frustrated because I feel he treats me like an invalid or a child...though I know he means well and does not mean to make me feel that way. I am very interested in the anti-TNFs and am going to do some research. At this point I am probably not really on the best medications. I take sulfasalazine. It works well for the most part for my pain but not the fatigue. My rheumatologist really wanted to start me on leflunomide but I wouldn't take it because of how long you have to be off it before you get pregnant. I think I can probably get better treatment once I've had a child. At least that's what I'm hoping.
Of all the things that Enbrel did for me, PG, the lifting of depression and fatigue were the most dramatic.
Do read up on the toxicity of leflunomide, especially with respect to pregnancy.
I did read up on it and that is why I refused to take it. Do you know how long you have to be off of Enbrel before getting pregnant? I know even with the Sulf. I will have to be off of it before trying to conceive. But Lef. was like 3-5 years and we plan on starting to try when we get married probably in August.
PG, it’s a highly personal decision, and one that you want to consult several docs about, I think. But in the case of leflunomide, for myself, I would not take it if I were of child-bearing age. But that is just me. I would not be comfortable with the risk.
Here’s the 411 on DMARDs and pregnancy –
http://www.arthritisresearchuk.org/arthritis-information/arthritis-…
I was reading about anti-TNFs and pregnancy yesterday, and will go looking for that article.
Here’s the article on immunosuppressive drugs and pregnancy. Of course, it is British and your US doctors may have a different take on the question.
http://www.arthritisresearchuk.org/news/general-news/2013/november/immunosuppressive-drugs-will-not-harm-babies-during-pregnancy.aspx
And of course, you know that many women go into remission during pregnancy.
Hope all of this helps.
Congratulations on your upcoming marriage! I just got married last August.
In regards to pregnancy- I thought I was done having children when I was first diagnosed, but we changed our minds a couple of months ago. I was on methotrexate for a year and we’ll be waiting until November or December to start trying because of the potential for birth defects and other issues. That being said, I was doing much better in terms of pain and peripheral symptoms when I was on methotrexate, and if I was not absolutely certain that I wanted more kids and absolutely sure I had adequate social, medical, and financial support in case I flare enormously when the baby is born, I would no doubt be back on the methotrexate or another DMARD and keeping my IUD in place. I’m staying on the humira until the last possible moment.
Also, I think it’s totally possible to be an awesome mom with psoriatic arthritis. Just make sure you have lots of support and that they do too!
Thank you so much for all of this information. I have an appointment with my rheumatologist this afternoon and have a list written out of everything I want to discuss with her....ideas from you all, things my mother has mentioned, and my own thoughts. Methatrexate is what my mother takes now. It didn't exist when she was first diagnosed at my age and she says it has been a life saver. I am so hopeful that once I have a child, I can get better treatment. The problem is, the here and now is causing a lot of issues with my boyfriend. He's not convinced of that and wants to either not have a child or plan for a nanny. As a stay at home mom and my mother living 1/2 mile away, I don't want a nanny. He's even saying now to have a live in nanny! I know he's trying to be sensitive and helpful....but it makes me feel useless and that he feels I can't handle being a mom. It's making me very angry and depressed...and we should be excited right now....he has the ring and should be proposing any day...
Congratulations, PG on so many fronts! You have a supportive and loving family and a devoted fiance who is really concerned and trying so hard (even if it is causing some friction). You have a rheumatologist and you have a list. LOL, yes, a list is a great thing! Depending on the doc, I will sometimes make two copies – one for them, one for me. Whatever … you are in an excellent position to work out the options that are best for you and your family. And what is best will depend on how things go down the road. And remember, you can only cross one bridge at a time. I’ll be thinking of you this afternoon, and I’ll be curious to know how your appointment goes.
And congratulations on the anticipated engagement. I’m betting on Saturday! You’ll let us know, won’t you, when it’s official?
I do truly have an amazing support system. When I am down, I try to remind myself of that. Just today I had lunch with a woman who goes to my church who is probably 35-40 years older than me and has suffered from the same thing. What a wonderful and inspiring time it was talking to her. And now I have all of you!
And my mama raised me to make lists....so I am a fantastic list maker!!!! haha
The appointment today went well. We have decided on Enbrel. We will have to wait for preauthorization from insurance but as long as that goes through I'm hopeful it will be helpful. The dr. said it is safe before and during pregnancy. I have heard conflicting things about this so will look into myself also. I will also be starting physical therapy and seeing a podiatrist.
I have actually asked NOT to be proposed to on Saturday haha. My ex-husband proposed to me on Valentine's Day so I'd rather we have our own day :) I will certainly let you all know when it happens.
Thank you for being so kind and supportive. It means so much.
Since there's no "like" button, I'll say "like"!
PastorsGirl said:
I do truly have an amazing support system. When I am down, I try to remind myself of that. Just today I had lunch with a woman who goes to my church who is probably 35-40 years older than me and has suffered from the same thing. What a wonderful and inspiring time it was talking to her. And now I have all of you!
And my mama raised me to make lists....so I am a fantastic list maker!!!! haha
The appointment today went well. We have decided on Enbrel. We will have to wait for preauthorization from insurance but as long as that goes through I'm hopeful it will be helpful. The dr. said it is safe before and during pregnancy. I have heard conflicting things about this so will look into myself also. I will also be starting physical therapy and seeing a podiatrist.
I have actually asked NOT to be proposed to on Saturday haha. My ex-husband proposed to me on Valentine's Day so I'd rather we have our own day :) I will certainly let you all know when it happens.
Thank you for being so kind and supportive. It means so much.
I am so happy for you, congratulations! Be sure to thank that support group because you are so lucky. I have yet to meet anyone in person who has PSA. So your mother and a friend must be a blessing! A little one on top of that a true blessing!
It sounds to me as if you should add your rheumatologist to your support system list. Aggressive therapy, podiatry, physiotherapy … she’s coveering all of the bases. This is very very good.
Of course, as a prudent person you are going to do your own research and make your own decisions about Enbrel. Myself, I’d feel pretty confident in choosing that alternative, but I am not you nor anyone else.
Not Saturday night, then … LOL sounds like an excellent reason to me. Besides, I think proposing on the 14th is sweet but a bit unimaginative. I say go for a prime number like 17 or 23. LOL
I’m impressed with your rheumie and the approach she’s encouraging you to take. I feel optimistic about your chance of achieving some control over the monster!