Exhausted with fatigue

By Mrsknacker

1 min read

I have been diagnosed for 5 years now with psoriatic arthritis (PsA) and I also suffer with severe psoriasis.

I have tried numerous medications and I’m currently on Secukinumab, which did clear my skin 100% for around 6 months, I felt so good, no pain or swelling and started to run again.

Now it has returned and very quickly I am watching it spread across my body again. I feel so embarrassed and shamed by my body and have felt so low with it I’ve had to take time off work. My GP has given me some antidepressants and they have helped with some of the anxiety, but I feel exhausted and in pain all of the time.

Just feel like I’m struggling along with life, work, parenting, and being a good wife. I’m trying to get back to running and joined the gym again, but I’m struggling. Doing things alone can be less motivational.

I’m tired of actually being tired all the time, pain in my neck and shoulder is overwhelming and disturbing my sleep. I’m seeing my rheumatologist beginning of Feb, so can’t wait to ask for something different to try, it’s out there, I’m sure just got to keep going. Even if it is exhausting at times. Thanks for reading my story.

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CathyD Moderator
Hey <inline-mention username="CommunityMember7227a4" user-id="8665415"/>, I've just caught up on your Story (I'm struggling a bit with the fatigue myself at the moment). Thank you for taking the time to share. It's so lovely to see your face too 🥰 If you wanted to make this photo your profile picture, you can do so by visiting the following link: https://psoriatic-arthritis.com/profile/edit I'm sorry you're having such a rough time at the moment. It's really disheartening when a medication that was working well starts to lose its effectiveness. I'm relieved to read that you have an appointment coming up next early next month. Hopefully the rheumatologist will have some suggestions for finding you the relief you deserve. PsA is such a lot to cope with, sometimes it seems impossible to keep up with the rest of life as well, especially to the extent that we'd like to. You're definitely not alone in this 💖 Please know that this community is here anytime you need support or just want to chat. Wishing you the very best for your upcoming appointment. Please keep us posted on how it goes if you can. Hugs! -Catherine, Community Moderator
Eric_the_Eric Member
I hear you in your frustration. I went through similar issues with biologics losing efficacy after a short time during the time I was getting Covid vaccines and boosters, and my immune system was really ramping up as a result. When you meet with your rheumatologist to discuss new treatments, it might help to include low dose methotrexate with any biologic they may decide on. Many people develop antibodies to the biological treatments, and methotrexate will often be prescribed concurrently for such people to suppress the immune system somewhat in an effort to help slow down/prevent the development of such antibodies. And these antibodies are specific to the individual biologic medications themselves, so failing one IL-23 inhibitor doesn't mean you can't try another IL-23 inhibitor. I've been on Skyrizi for over a year now with no loss in efficacy, but since I cannot take methotrexate, I've no idea how long this will last. In the meantime, it may be helpful to open a dialogue with your family, and let them know that you will sometimes need a break from the 'normal' daily routines, and start shifting some of the responsibilities around to give yourself those breaks. I was a work from home/stay at home husband and father, so I can relate to these issues. It's not easy to get family members to suddenly switch gears and take on greater responsibility, but sometimes it's necessary. At least temporarily.
SareBear Member
<inline-mention username="CommunityMember7227a4" user-id="8665415"/> take or leave this advice, but I am commenting because I read the heartbreak and defeat in your words. Please hang in there and do not blame yourself as it is not your fault. Treat your body well (take baths, rest, get massages or a massager and give yourself the grace that YOU DESERVE). You seem to be in the middle of a monster flare and need to reduce your stress level. Explain your reality to your loved ones and ask for their patience and grace. Try gentle, light yoga and meditation: close your eyes in a comfy place, use a heating pad on your painful body parts and listen to the world around you. Do you hear the ambient noises in your house? Did you ever before notice how loud they actually are when you stop and listen. Your thoughts may not be able to be kept at bay, so get read to acknowledge and accept your thoughts as you move past them. Do this for as long as it takes. There are often free meditation lessons/teachers on YouTube. I hope that relief comes very soon for you.
Diane T Moderator & Contributor
Hello <inline-mention username="CommunityMember7227a4" user-id="8665415"/>, I am so sorry you are going through so much with this disease. I have had severe psoriatic disease for 60 years, and have been covered most of my life. I understand. I have said these words a thousand times - nobody understands our struggles. I have been on 8 biologics in 20 years. I am on Skyrizi which works wonders for my psoriasis, but not the PsA. It's hard for families to understand, so just take baby steps with them. Take time for yourself, we tend to put ourselves down when it's not our fault. I can hear your sadness, but just know you are not alone. Let us know how your doctor's appointment goes. Oh, by the way - I loved your picture. Diane (Team Member)
1. Diane T Moderator & Contributor
 Hello <inline-mention username="CommunityMember7227a4" user-id="8665415"/> , Just checking in to see how you are doing. I hope things are getting better for you. Let us know how you are doing. Diane (Team Member)
Mrsknacker Member
<inline-mention username="Eric_the_Eric" user-id="6704533"/> <inline-mention username="Diane T" user-id="3306420"/> <inline-mention username="SareBear" user-id="5530395"/> , thanks everyone for kind words and advice , Eric you were right they have introduced methotrexate 10mg weekly Injection , the nurse was fantastic and got it started there and then , had a steroid injection for the pain and felt better when I left. No sickness yet !!! 🤞 I’ve took this week off sick as my skin is so sore and the itch has been outrageous, trying to relax , walk, read , actually look after myself for once. It’s so hard isn’t it !!! 😩 But definitely feel in a better place than 2 weeks ago 💪 hope your all doing okay , Just a quick question do any of you have food or milk triggers? Xx jacques
Diane T Moderator & Contributor
Hello <inline-mention username="Mrsknacker" user-id="8665415"/> , It is so good to hear from you. I was on MTX too. It did help for a while. I can't eat anything with tomatoes. I literally scratch holes in my skin. The other thing is alcohol. I haven't had a drink in over 25 years. The problem with that was when I drank I would have an immediate flare. When I woke up the next morning you could see the outline of my body from the scales. I have PsO too, and everything in my body hurts. It was not a pretty picture. Are you experiencing any food triggers? We would like to hear from you. Diane (Team Member)
Amy68 Member
<inline-mention username="Mrsknacker" user-id="8665415"/> I'm so glad you found your way to this community! The members are so supportive and offer so much information to help in coping - and to let you know you aren't alone in living with this. I've been lucky recently in starting a medication (Skyrizi) that has helped relieve many of my symptoms. But prior to that (and sometimes still, when I overdo it and take to the couch), it can be hard to control the inner dialogue that chases around in my head. "I'm single and should probably stay that way so I'm not a burden to anyone on the bad days or as the disease progresses." Or, "What's the point of all this if I'm just going to get progressively worse. Maybe I should just stop taking all the meds and let nature take it's course." Or, "Why doesn't anyone understand that just because I look fine at the moment doesn't mean I'm not in agonizing pain and I can't keep up with them?" It can be so hard to get out of that loop, and worse, stress is trigger with this disease, so it's literally NOT helping. But try telling my brain that. This community has been so helpful. Reading what others are experiencing, while I hate that they struggle (sometimes worse than I am), reminds me that I'm not alone in this. Learning how they cope, their tips and tricks, all help. And many times, offering my own insights to others who are struggling lifts my spirits. Please visit often and I hope you and your doctor are able to find some solutions for you very soon! Take care of yourself! 
1. Diane T Moderator & Contributor
 Hello <inline-mention username="Amy68" user-id="6765940"/> , you did make me blush. Thanks for such kind words. You are my new best friend, sorry <inline-mention username="Vickie Wilkerson" user-id="3316344"/>. I met Vickie at a conference many years ago. We hit it off immediately. I have so many issues with my health, but she is also another person who can make me laugh through my pain. This is why communities like these are so important. You never know who is going to be your rock. It looks like you need to take it easy. That was a lot to do in one day. I was 80% covered when I started Skyrizi. My psoriasis is almost gone, but the PsA is kicking my butt. I see my doctor next month to see what medication they can add in. I need for you to take it easy, take it easy, take it easy!!! We are here for you. Diane (Team Member)
2. Amy68 Member
 <inline-mention username="Diane T" user-id="3306420"/> Happy to be your new BFF - sorry Vickie - and count you as mine! lol I do love her sense of humor too! 80% clear is a big deal! Yay! I hope the doc appointment next month provides some solutions for the PsA side of things. Have you talked with your nurse advocate (or whatever they're called, I can't seem to remember the term) to see if she has suggestions? I've been trying to take it easier. Now I have these bizarre shooting pains in the right side of my right ankle and the right side of my right wrist. I didn't do anything to hurt either of them, haven't overused them, but this has been going on for several days now. I'd gotten in the habit of wearing slippers rather than crocks because they're warmer, and switched back to crocks but that hasn't made a difference - plus I don't typically walk on my hands, so that doesn't explain the wrist pain. It's not continuous - sometimes I can walk across the room normally then my next step results in a sharp stab of pain, or I can lift the milk jug out of the fridge and pour a glass, but get a sharp stab when I put it away. Sometimes it hurts with the first step or with a simple movement with nothing in my hand at all. No rhyme or reason to it. The only thing I can think of is being so close to that next injection maybe some of the efficacy of the meds has worn off. But these two spots aren't where I typically have joint pain and it's a different kind of pain. Ugh. I have an appointment with my new GP on Thursday, so I'll mention it, but I know all he can say is to get them x-rayed. How are you feeling this week?
Diane T Moderator & Contributor
Hello friend <inline-mention username="Amy68" user-id="6765940"/> , Have you ever met anyone that every time you say you got something, they got it too!! Well, that's going to be me with you. I've been having hand pains for a while, but the wrist pain just started recently. I do see several doctors, but they all have their specialty. I try to lean on my primary care doctor, but the only thing she is good for these days is giving shots and checking my pee!!! I am feeling pretty good. It's just my hands and shoulders that give me the most problems right now. My next shot is on Tuesday - I believe. I hope your doctor's appointment goes well next Thursday. I will be checking in on you. Diane (Team Member)
1. Amy68 Member
 <inline-mention username="Diane T" user-id="3306420"/> I think the "Oh I've got that too!" is pretty understandable since we both have PsA! I'm sorry your hands are bothering you. I wonder if anyone else on Skyrizi has wrist (or ankle) pain. You know what the pain feels like? When I was young and wore high heels a lot, sometimes my ankles would feel strained. It's that kind of pain, both in my ankle and wrist - is yours that sharp shooting feeling too? I sure haven't been wearing high heels though! I know what you mean about the primary doc. Bloodwork and cholesterol med refills, for me, and the occasional bizarre issues, like an allergic reaction to some bug that bit me a year or two ago. I'm glad you're feeling better - now to get your hands and shoulders good too. Have they hurt through this whole dose cycle or was there any relief early? It hasn't seemed to make much of a difference with my back, but I suspect the issues there go beyond PsA. In getting ready for this new doctor, I sent my medical records to him and as I was reading through one to make sure it wasn't a duplicate, I found this, from a chest x-ray four years ago: "Multi-level degenerative changes are present throughout the visualized spine and acromioclavicular joints." I can't believe I didn't notice this at the time, or that my doctor didn't comment on it. I had to look up the acro-thing. Its basically the joint between shoulder and collarbone. This explains a lot of my upper back and shoulder pain. And who knows if Skyrizi can even help with the pain from that or the degenerated disks in my lower back. Or if PT would help either. Ugh. We're tough though, Diane! We'll find a way through this!
Diane T Moderator & Contributor
Hello <inline-mention username="Amy68" user-id="6765940"/> , Yes my friend we will come out on top. We didn't come this far in life to fail. We are 2 of a kind. I also went back and looked at old medical records. I didn't find anything new except that I have chronic kidney disease. It's at a level 3, but no one bothered to tell me. Don't worry, I went to see a neurologist and he told me what to do to improve them. On my last appointment with him, I was a stage 2. That's another story. But, the point I was trying to make is that we have to be our own best advocates and take our health into our hands. You keep moving forward, and let us know about your appointment next month. I don't know about you, but I'm not a fan of doctors rushing in and out. I make sure to make that a point when I set up my appointments. Do you take a list of issues, symptoms, and questions for your doctors? It's so hard to get appointments in the first place and I don't want to forget to ask anything. I know I get on their last nerves and I understand their time is valuable too. Keep us in the loop and we hope to hear from you soon. Diane (Team Member)
1. Amy68 Member
 <inline-mention username="Diane T" user-id="3306420"/> we are 2 of a kind! I had a kidney lab come back at stage 3 (or 2? whichever is worse) a few years ago, but on the next test it was back within normal ranges and hasn't varied much since. I hope in your case it was just a fluke - maybe something you ate in the days just prior to your labs. Keep me posted. You're on my prayer list. As to being our own advocates, I couldn't agree more. I read a lot to educate myself, I ask questions, and if I don't feel like I'm getting the results I should, I push. I wouldn't have gotten this diagnosis if I hadn't pushed. I feel pretty good about this new doctor. It's a Direct Primary Care practice, which means they don't take insurance. Instead, I pay a monthly rate that allows me unlimited office visits (included in monthly rate), and I can reach out via phone or email for simple things. It also includes discounts on labs, meds, and imaging, and in many cases they have agreements with area specialists for discounted rates. It's not as good as having insurance, but for regular everyday health needs, it's a lifesaver. He called me after I signed up and spent nearly an hour on the phone with me asking me questions and allowing me to ask questions and has scheduled an hour for my first visit. It was supposed to be last Thursday but I had an emergency issue come up at work and had to reschedule for this week. How are you feeling today? I had a hectic week last week, so I took it easy over the weekend and feel good today. My injection is Wednesday - yours is Sunday isn't it? Hugs!
Diane T Moderator & Contributor
Hello <inline-mention username="Amy68" user-id="6765940"/> , I hope you are doing well. Sorry, I ghosted you for a few weeks, had to leave town. Yes, I did take my injection on Sunday. It's a good feeling to have a good doctor - trust me I know. I loved the fact that he took the time to talk to you on the phone. Please keep me on your prayer list. How did your doctor's appointment go? We would like to know if any changes were made. Diane (Team Member)
1. Amy68 Member
 <inline-mention username="Diane T" user-id="3306420"/> Look at me, replying only a day later, rather than six weeks or more! That grandbaby - I LOVE that age! They're so stinkin' cute and cuddly and so in awe of everything they see. Enjoy every minute, but also do try to pace yourself. But you know this. As to the pups, I hope you live in an area where fireworks aren't an issue, or that they're not afraid of loud noises. I've been dealing with a 101 pound trembling, panting, drooling mass of fur trying to fit on my lap after dark every evening since Tuesday and we're both about over the fireworks. Last night they finally stopped around 10:30, then sometime after midnight (so rude!) I woke to another series of booms and a German shepherd blanket. Poor boy. I've set a reminder for next year to find a place far from people for the holiday so he doesn't spend the whole time having panic attacks. The Bahamas! I hope you had a wonderful time, perfect weather, and got to enjoy some time in the water, lovely music, and great food! I'm so proud of you for not cheating - that's when it's the hardest. As to falling. In GA, I lived in a house with 8 steps down to cement pavers. I've fallen down (or up) those steps half a dozen times in the last few years and while I had some legendary bruises, never broke anything. Here, I fell (once) down three steps, onto thick Kentucky bluegrass, and broke the blasted thing. I think I'd just gotten out of the habit of being careful how I moved. Skyrizi has helped with some of the daytime stiffness, which also served as a reminder to be careful. A lesson I feel pretty sure I won't forget again anytime soon. (Even after I can walk on two legs.) Enjoy your time with that baby! My daughter called the other day and said she's planning a visit home in late Sept/early Oct. She's lived in Beijing for the past six years and has only been back once. I'm so excited! Have a lovely weekend!
2. Diane T Moderator & Contributor
 Hello <inline-mention username="Amy68" user-id="6765940"/> , the baby was a bundle of joy, but I truly forgot how much work they are. She kept me on my toes, but I wouldn't trade it for the world. The Bahamas was perfect. I am 66 now, and this is the 2nd time in my life I have had on a bathing suit and not cover-up. The first time I wore a bathing suit I was in my teens and was asked to leave a pool. That scared me for life. Skyrizi has done wonders for my psoriasis, but not for the psoriatic arthritis. I was on Methotrexate, but it was causing me to get infections, so I was taken off of it. Right now, I am just dealing with the pain. My poor babies are so scared of the fireworks too. One moment I sit in the bathtub with them. (no water) I was trying to drown out some of the noise. They can't just do one day, it has to be 3 days of shooting off fireworks. I'm with you, next year I'm taking my fur babies to a quiet spot. Oh, I'm so happy that your grandbaby is coming to visit. You are going to have so much fun. Thanks for replying back to me so fast. 😀. It took me a few days this time. You take care of yourself and please don't fall anymore. It's so nice talking to you. We would be great neighbors - I can tell. Enjoy your day, Diane (Team Member)
Arthritic.Adventures Member
Keep your chin up Mrsknacker! I've been there myself many times and I'm starting a third Biological now. It's tough for others to understand the the feeling of everything we have to get through mentally and physically with the disease before we have to tackle everyone else's "normal" issues. (I hate my job, my boss, my commute, blah blah blah) Imagine how easy life would be if all we had was that!
1. Mrsknacker Member
 <inline-mention username="Arthritic.Adventures" user-id="9753953"/> Thankyou for kind reply , I’m now on methotrexate too and my skin is finally looking better, fatigue and joint pain is still overwhelming…. But as you say we carry on and support the woes around us. Everyone has their own bits going on and that’s relevant too. Nothing like a vent, though it’s good to stay focused on the positives! I am worried about my mobility as I get older and becoming more dependent of others , weird that my husband is thinking about winding down and I’m all for winding my life up , career moves , work more , as I’m scared of the future. How is your mobility ? How is your medication working for you ? What are you now on ? Jacques
Arthritic.Adventures Member
Your welcome for the reply, I'm very lucky with my mobility, it's challenged occasionally but I can generally still do most things I enjoy like playing tennis and riding my Adventure Motorcycle. The latest Biological I'm on is Tremfya, but it's only been since November, other than that the usual Diclofenac and Methotrexate. You need to keep your exercise up as you get older, do what you can, walking if that's all you can do, something to keep everything going. Never give up!!!
1. ClairG Moderator & Contributor
 <inline-mention username="Arthritic.Adventures" user-id="9753953"/> I also use Diclofenac for pain and find it quite helpful. My psoriasis is not crazy about it though and it can quickly cause a flare if I take it for too long. How are you feeling on the Tremfya? Wishing you an easy day. - Clair ( Team Member)
Arthritic.Adventures Member
Tremfya could possibly be the biological that gets me back to being superman, Clair! However we all know that we are more of the solution than our meds. Last Novemeber I quit sugar, added salt, processed foods of all kinds and got back to the Mediterranean diet. No alcohol (lots of zero alcohol beer) and I've lost 30 pounds. (5'8" was 200, now 170) My whole body was full of aches and my knees felt like they were both long past need of replacement. Today my knees have settled down and so has the rest of my body. I'm back playing tennis and riding my mountian bike, not in the same day but I'm working towards that now. I'd love to say it's all the Tremfya but it's not. Here's a great lesson for anyone that thinks it is. (Just my experiance) My wife and I recently when to Mexico. I though maybe I should have a short break too and indulge a bit. I had a few drinks the first day, ate too much but all food that fit the Mediterranean diet. Got up the next day with a little hang over, no big deal. Same thing eating wise, and I added a few sugary deserts. With in 3 days I was looking at the stairs to our second floor room and dreading them. Up was rough but down became sideways and two feet on each step holding the rail like an old fart (I'm 60 and old fart). This is within 3-4 days!!! I stopped dead in my tracks got back to my new eating habits and helped carry the luggage down the stairs at the end of two weeks. It was a VERY frightening experiment!!! I was sooooo worried that I had caused a flareup that could last 6 months or maybe even never get back under control. In most cases we are the biggest part of the solution. I've fallen on and off that bus myself many many times in 55 years since my diagnoses but none were so in my face as that little experiment. I'm done experimenting on the dark side!!!!!
1. ClairG Moderator & Contributor
 <inline-mention username="Arthritic.Adventures" user-id="9753953"/> This made me smile. Thank you for taking the time to share with us. Firstly I do hope that your holiday was WONDERFUL. That you rested and enjoyed the good food and quality time with your loved ones. Sometimes we need to experience things firsthand to believe it. Sugar is a killer for me too, white refined sugar especially. I can still use brown organic sticky sugar, the more raw the better. I find that sugar in particular for me, shows quick decline and quick relief. I manage just fine with natural sugars, it's the refined ones that destroy me. I am honestly just so delighted for you that you are finding this relief. Onwards and upwards to be adventures. - Clair ( Team Member)
Arthritic.Adventures Member
Hi Claire, It's Colin, need to a a hype to that name if I can "Arthritic.Adventures-Colin" I'm interested in your post about sugar, I've never really got that granular with my investigations into what bothers my PsA. So you have figured out that the more refined it is the more it effects you. Hmmm I switched a long time ago 10-15 years ago to brown because it's less refines and I like the taste better. The holiday was great I have the most understanding wife. She just rolls with the punches and happily runs down and throws some towels on a beach chair in the morning so I don't have to do the stairs more than once. It all worked out. Interesting thing happened when we were there that will bring me to a question for you. The first night I was having a show and the big case iron shower head broke of and fell on me. scratched my wrist up on the way down too. I resulted in the hotel give Sue and I a pass to the Hydro-Spa for the length of our trip. We ended up going there daily as part of our morning routine, it consisted of Sauna, Citrus-Shower, Steam-Room, Citrus-Shower, Hot-Bath, Cold-Bath x3. The hot and cold plunges left me feely great for hours with my aches and pains. Not sure how I would achieve this at home but boy it worked well. Might be how I got back on track so fast after the error in my ways. Do you know? (Or anyone at PsA?) if there is any foundation to this being specifically good for Arthritis sufferers? I haven't had a chance to do an research
1. ClairG Moderator & Contributor
 <inline-mention username="Arthritic.Adventures" user-id="9753953"/> Hi there, Colin. Ah your holiday sounds so wonderful. what a delight to have such a supportive wife. I figured the white sugar thing out completely by accident, I had moved into a new apartment and spoiled myself with some good organic sticky brown sugar. As it is more pricy than the rest I usually do not buy it. I used it and enjoyed it so when it was done, I switched to white sugar again, possibly by force of habit. Within a few days, my pain levels had skyrocketed, I was waking up in a huge amount of pain, and that was when I realized that it was a bit better than it had been before and the only thing I had changed was the sugar. So I promptly changed it back to organic brown and within the week I was feeling much better. The pain was still there but nothing like when I was using white sugar. I immediately changed all processed white sugar, I don't use it for anything at all anymore. I do know that there are people who use cold plunging for recovery from injury etc, or cryotherapy. We have community pool in our apartment complex and during winter I use it as often as I can to plunge, and it has definitely made a difference for me. Hopefully with many small changes I can find more relief from my psa. - Clair ( Team Member)