I am so angry with my body right now - as in like ever since I got diagnosed. It is just up and down and down and down and maybe a little bit up then down. My Humira isn’t working now and it is like a crash and burn- although I am hoping it is the stress of the holidays and also that’ve can’t tolerate the mtx and I’m waiting to replace it. Yesterday I had to sit in the aisle of Joann’s fabric store because my ankles and heels and legs were hurting so badly I couldn’t stand any longer - after about 15 min of shopping for material. My migraines are so terrible that I have had to take a dexpak, which is a steroid thing, which turned me into a crazy insomniac with a bright red face?! The last one was so bad I broke capillaries around my mouth and eyebrows throwing up. Do any of y’all have migraines? Is there a relationship bt PsA and migraine? It is just overwhelming and I can’t handle it sometimes- I want my life back. I feel worthless.
Hugs! You're going through a lot right now - it sounds like it's completely overwhelming. Be gentle with yourself.
I have migraines, too, but have no idea if they're PsA related. I'm going to talk to my doc about them again soon, though, because lately I've noticed a correlation between neck pain / inflammation and migraines, so it could be my spondylitis acting up.
I hope you find treatment that gives you relief soon.
It will get better, TigerGirl, but when you’re going through such a bad time it’s hard to see how it could. I’m sorry you’re going through such a rough patch during the “let’s be jolly” season. Everyone else seems to be having fun (the important word is “seems”) while you are trying to cope with the miserable side of this wretched disease.
It’s New Year’s Eve, and I’m alone as my husband and house guests have gone off to watch the fireworks. They weren’t going to go because they didn’t want to leave me alone at home. I insisted that they shouldn’t be deprived of the fun because I can’t stand on my feet for more than about five minutes. I sincerely wanted them to go, but it’s still hard not to have a pity party as I sit here by my lonesome with my laptop. I hate this disease, have I ever mentioned that?
It will get better. Your meds will be changed, and with any luck you will have a solid response to whatever you go on next. This evening I’m reminding myself that in 2013 I started Enbrel, and that I now feel better and more energetic and happier than I have for about 20 years. Too bad about the feet, which were damaged before the Enbrel was prescribed and got a chance to work. It will get better, Tigergirl. Wishing you better health and happiness in 2914.
I so know how you feel. I hit an all time low yesterday, myself. Here’s to a better year for all of us living with this damned disease!
LOL … 2914
What was I drinking last night??? Blame it on stiff fingers.
TigerGirl: Believe it or not, when a person is diagnosed with a chronic disease - especially one as mysterious and debilitating as PsA, we go through a grieving process. Be angry. It is ok. Be disgusted. That's ok too. I wish I could tell you that feeling worthless was a momentary thing, but sometimes it isn't. It feels like our body is betraying us, and there is absolutely nothing we can do about it - but there is! You are doing it. You are taking meds and switching meds and finding out what works for you. This is a positive thing! You are coping with the disease as best you can...and that is a positive thing as well. It may take some time to get the meds just right, but eventually you will. It is so hard to see that there is a end in sight to this constant depression and misery, but there is. It may not be a long-term solution, but eventually you will find a combination of meds that work just right for you. They may change over time, but each time you go through it you get better at coping with it and figuring out how to modify what you do so that you can keep living your life on your terms.
As for migraines/PsA correlation, I don't know. I know that many of the people I've talked with about PsA also have migraines, or in my case, cluster headaches. It is really hard to know if we are getting migraines because of the stress of having PsA, or if the PsA is causing them. I guess it doesn't really matter altogether which is causing which. I have been known to take a frozen bag of peas out of the freezer and put it on the back of my neck, cover my eyes, kick the animals and kids out of my dark, dark room, and vegetate for awhile. It sometimes helps if I catch it early enough. That way I don't have to take anything stronger than an excedrin migraine pill. You might ask your doctor if there is a nonsteroidal med for your migraines. I take Fiorcet, which knocks the headache down without the flushed face and crazy hormonal rages. Also ask him for an emergency supply of promethezine ointment (comes in a non needle syringe. You put a tiny dot on the inside of your wrist, then rub the wrists together) to combat the nausea/vomiting.
Most importantly, know that we are here to listen and to commiserate with you. We may not have exactly the same experience as you, but we do know this PsA stuff is terrible. We get it. It is such a precious gift to have others who truly understand what you are dealing with.
I don't know how long you have been diagnosed, but over time you may start to see a pattern in what is happening in your body, so you will know what days are likely to be bad days and what days are likely to be good ones (notice there are no absolutes in that sentence, because "good days" can turn into "bad days" quickly). Maybe plan shopping trips on days that are likely to be "good" ones. :) Everyone in my family knows that I don't make future plans more than a few days in advance, and that those "plans" are fluid because of how I may be feeling on any given day. It took some getting used to (I'm the plan ahead, strategize, and keep to a specific regimen kind of woman), but I've had enough "collapse-in-the-aisle-of -Hobby-Lobby" moments to realize that something needed to change.
If you are up to it, you might try keeping a symptom journal. For a couple of weeks or months log your activities, your symptoms, days and times, etc. (including migraines). There might be a pattern there that you aren't seeing without really consciously thinking about it.
Most of all, know that we hear you, we care, and that we really, honestly wish things were different for you. hugs.
I know just how you feel, I’ve always had migraines my whole life, I take Relpax, I want my life back too, I’m so sick of it and its only been 8 months.
It's ok Tigergirl, you will make it kiddo......
I have had Migraines for as long as I can remember. They have been so bad in the last few years that they are nearly constant and have done so much nerve damage in my face that I can only feel the eye pain and the nausea now. I saw my Neurologist on Tues and I am now on Topomax, Gabapentin and Immitrex ( Summatriptan) for emergency relief. I was told that I have severe nerve damage in my legs and feet from the PsA in my lower back. I just found out last summer that the illness I have been suffering with for the last three years is PsA. I am just now getting the DMARDSs ordered so we can do the pre-requistie six months before we can order the Anti TNFs as required by my insurance.
This has been the most impossible time of my life to deal with. It is Hard, it sucks and it's no fun to be left out. You can do this for you however. Keep on coming here and venting and receiving support. This crap will back off eventually and you will be able to breath easier and have a life. Take control and use your anger to your advantage, learn everything you can to make your life/ coping easier. We will hold you up..... so maybe you can try crying it out and then- get mad, get active and fight for you!!!!!! XXXXXXXX's
My son's migraine trigger is citrus - and especially oranges. I am not sure if this advice will help or if your migraines are connected to the PsA. But, cutting out citrus and especially orange juice did the trick for him.
You guys are a gift from God to me. I have had a terrible few days. In fact I am just wiping away the last of my tears from the lastesr crying spree. Everything you said lifted me up. I am grieving. I see my friends instagram pics and they are jogging!? No fair??? I want to JOG!! Now I am crying again. I have these Christmas decorations up and I have no idea how I am going to get them back in the boxes. I felt fine when I put them out… I have no one who gets it except my husband who is always there for me. But he works so much and it is lonely. So many have it so much worse how can I complain? I need to get my act together but I am so so so tired and I hurt…
We hear you. Taking down those decorations: one. at. a. time. Then rest. Repeat. Eventually it will get done.
Heck! Just leave them up and get a jumpstart on next years decorations! :)
Christmas isn't over until Epiphany, January 6 (the 12th day of Christmas), so no worries. :) A couple years ago my kids put away the Christmas decorations for me and missed an angel and an elf. They've been in my living room for over two years and aren't going back in the box this year. They are my reminder that I don't have to do it all, ever.
I, too, am having major body frustrations. The swelling and deformities have really increased some of my long standing depression. I've also been feeling as if once again, I have been betrayed by said body.
I, too, hate the puffy face I get with steroids. It makes me feel all blegh and I almost have removed all mirrors from my house to prevent me from seeing it. Almost.
As for Xmas decor, my family has a long standing tradition of waiting til close to Easter to get them down. So as long as I get them down before then, I'm doing good.
Sybil, I was like you for awhile, my pain was controlled but my fatigue was out of control. Then when I got my meds balanced I was on fire- in a good way. I made so many things over Christmas. Origami and garlands and ornaments. I felt really happy, but my rheumy warned me that going off my mtx might cause problems and booooo did it ever. My feet and back and wrists and neck and hips and even my jaw. Heck- my whole body. I am a hot mess. I can barely stand to touch the side of my face and even standing do a short task makes my ankles and feet swell and burn. They are ghastly! I feel like I had the rug ripped out from under me. It’s always one step forward and five back it seems. But now I am complaining a-gain!
Seenie, My feet feel your feet’s pain. I have been left behind before l, too, because of my feet. It really does seem like everyone is having fun- but I think that is because they are… I am pretty young to be housebound. I have been boo hooing off and on for a couple of days. I guess I should put a sock in it until I see my dr and see what new med he has in store for me. Joy. I hate that I am being so cynical instead of hopeful. Maybe it’s a stage-- like denial? I have not been sleeping and that definitely is contributing to my problems. I can’t exercise and I am frustrated and angry and can’t sleep and to top it off I feel like a truck hit me and I can’t walk on my feet unless I tip toe. Aghhhhhh!!!
Wolfie & Crazy, The best thing anyone can say, “We hear you. We care.” Seriously!! I can’t get that anywhere but here. My family, bless their hearts, just says all the wrong things. “I have arthritis in my fingers.” (What? No…) “I wish I could stay home and rest.” (Ummm- bite me). “My back hurts all the time, maybe I have that too???” (Look over there while I club you, please). Not my husband and kids- hey are the best - usually - I mean, you know, we all have our moments (esp 18 year old girls) but my daughter told me the other day, “Mom, I use to look at people who parked in handicapped parking and if they didn’t look like anything was wrong I would hide them, but I don’t do that anymore.” That made me really feel good. She gets it. I will be keeping all of you in my prayers!
Sunny, I have chubby cheeks. Actually that really isn’t the only chubby thing but… Whatevvv. Don’t you dare get rid of your mirrors!!! You do what I do. You find the cool thing about yourself and focus on that. I have amazing skin!! That’s right- I said it 
like porcelain!! Lol. If I lost a bunch of weight my skin would be all wrinkly. No thanks. Focus on your strengths. The world would be boring if we were all a bunch of skinnies (& that is according to my daughter the ballerina - she is a real ballerina and has to be very skinny- She loves variety).
NYM, lol I have never put all my decorations away. I usually just develop a blind eye to whatever is left sitting out. I am sure people who come to visit wonder why in the world I have an Easter egg wreath hanging up in June, when I don’t even see it. I was a little appalled to see that I had passed this on to my oldest daughter (the dancer) when I went to her place the other day and her pumpkin was still on her porch…
Like mother like daughter haha. She is a spry young thing, though, and has no excuse!! 
Thanks for being here for me!!!
That should have said:
Mom, I use to look at people who parked in handicapped parking and if they didn’t look like anything was wrong I would judge them, but I don’t do that anymore." That made me really feel good. She gets it. I will be keeping all of you in my prayers!
Hang in there TigerGirl. What you are going through is completely normal. It's OK to grieve, and be angry, when life seems to go on without a care in the world, while you are in survival mode. Seeing friends and family doing things you used to be able to do, or just can't do right now, it's tough.
Remember, it's a stressful time of year with the holidays, and if you are in the northern hemisphere, a time of darkness and cold.
Here's a small bit of wisdom I've learned over the years:
When times like yours come upon me (pain, frustration, grief, etc), instead of fighting against it, I wallow in it. Embrace it. Take time and just *be*. Usually within a few days I feel some transformation take place, and I have some new ideas of how to *make changes* (emotional, physical, or both) that will help me do better. I look at each period of anger / grief as my body / mind telling me something has to change. If I fight against / refuse to acknowledge my depression / anger, it tends to make things worse, and I don't change. If I embrace the problem, I can let a solution bubble to the top.
I don't know if that will help you, I've just found it works for me. But my mind is always churning for a better way to deal with things, I just need to let it work :)
TigerGirl said:
You guys are a gift from God to me. I have had a terrible few days. In fact I am just wiping away the last of my tears from the lastesr crying spree. Everything you said lifted me up. I am grieving. I see my friends instagram pics and they are jogging!? No fair!?!? I want to JOG!! Now I am crying again.
Marietta! I knew you would have words of wisdom! What you said about wallowing is what I need now and probably why I am having such a spell. I can’t wallow because I have my daughter home from college. She is a joy to me in every way! But she is a teenage girl and she has many needs and it is her first year of college, which has been a huge adjustment for her. She is what I would describe as a beautiful geek- a homebody who needs her me- time and loves geeky things like Harry Potter and reading for fun. Gasp!! To look at her you would assume she is a party girl because she is just so stinking cute and ‘sratty.’ In case you don’t know that’s the girl word for Fratty haha. It’s basically war in our house ab half the time, with new indepence being tested and also trying to make sure that the holidays are fun and memorable, in spite of my illness and limitations. I feel guilty all the time for ruining everyone’s plans. I am a downer. I can’t clean or bake or do the laundry and I will admit I get defensive if anyone says anything about the state of our home. It is only a mess now because she decided we should redo our playroom/craft room (painting it and purging all the old shelves and replacing them with new ones (so pretty!) and a new sofa. It has been a project on our to do list forever because she and er friends never have a place to hang out. She did the painting with my husband and it looks so amazing but -tttttttttttt we all know what happens when you do a project like that. Disaster zone. And I can’t keep up. Of course there is MUCH she isn’t capable of doing (moving furniture- we had to cut the top of the doorway to fit the sofa through!, organizing my craft and sewing supplies etc). So on top of all the decorations we have the piles of stuff.
Sorry- I got off topic. I can’t even bend down to put on my socks so this is not cool. Plus - yep there I more my husband sold my car because he had a buyer and now I have to go with him car shopping or I won’t have a car as of Saturday. I don’t even know what kind I want. It is kind of good news because I had a small convertible an getting in and out was very hard on me but all these things have converged into te perfect storm. I think I better stop complaining an start learning to say NO lol. But when it is people you love who do so much for you it is easier said than done. Because he is away at college we have to make the most of her break. But I think it is going to break me. I am going to take your advice, though, and schedule a massage and pedicure for when she goes back to school. I need it!
No wonder you are about to snap! Renovation, daughter home from college, holidays, Yikes! You probably need to crawl into a hole for a few days once your daughter goes back and reset yourself!
I'm sorry you are having a hard time. It sounds like you could really use a big hug. Don't be too hard on yourself...of course that is easier said than done. I find that taking several short breaks (on bad days) helps me get through whatever tasks I've planned for myself.
I also suffer from Migraines, but I don't think they have anything to do with my PsA. I had migraines before being diagnosed. I have noticed a correlation between my migraines and my blood pressure.
I hope you are able to find a treatment that gives you some relief.