Tired of being all positive and energetic like i'm gonna fight this. truth is, i am going to deal with this until i no longer can, then its over. i'm not kidding myself anymore. i'm negative today, but i get worse and worse and am coming to terms with this disease. i had enough to deal with before this. more and more and more. i try chiropractic, physical therapy, ice, heat, m.d., biologic, muscle relaxers, pain meds, pain patch, magnets, menthol rubs, etc etc. nothing helps me. Hope it helps others, but i get worse and worse. i can barely take care of family or perform job. feel like a burden. so much for staying in shape, keeping hair fashionable, teeth white, heart in shape. it doesn't matter anymore. it's not worth the energy it takes. i can't believe this is the hand i was dealt.
I hear you Michelle, I am fairly newly diagnosed (3years ago) and I just broke down in tears on Saturday when talking to my partner. Im only 28 years old and I feel like I’m 80! I feel like its not fair on my partner to have to hear my complaining all the time, saying I’m in pain. He feels helpless and I feel bad for making him feel that way it’s ok to feel sorry for yourself Michelle, we all have at some point…
I am so sorry to hear that nothing is working for you. Are you aware that Stress will only make things worse, so do try not to stress if you are. Overcoming stress often means finding alternative ways of managing the things that stress you.
I find I do have to rest very often and sometimes all day long some days and use what I can to ease my pain. It does not sound like you are giving your body enough time to rest and relax. Some relaxation breathing might help. Can you take some time off work and can you get some help at home that might help you for a while. Perhaps it might be worth trying to completely take a day or two off to see if this makes any difference.
I do understand where your coming from. I so often wonder what is going to happen to me if this disease just continues to get worse and worse. I wonder if the day might come when I might prefer to check out rather than go on.
This is not depression, this is how I feel and think and I wonder what the long term effects will be on my life.
Maybe you can relate to what I am saying. I find that it is very easy to get stuck in a place with this disease. I can't see a way out or how to improve my situation, I have been there many times before. This mainly happens to me because I just don't want make the decision to choose the option that I don't want face up to. This happens because it is not the way I want my life to be and I don't want to seem to be giving in to this disease either.
I am older but a younger person should not be thinking this way. You need to be there for your child/children. I have lived long enough to see so many cures or treatments come about and there is always hope for that to happen for PSA.
There are always options even if this is not the way we hoped or planned our life to be. Continuing to work and take care of your family sounds like it is more than you can manage right now. If so, what can you do to change this situation? Where can you get some help?
This might be the time to have a good talk to your partner. You could also see a counsellor/therapist to help get through these tough times and it could be something worth considering. It is not easy if you have always been the one that keeps everything going.
One other point that I feel is worth mentioning and that is to make sure you eat as healthy as possible to give your body every possible chance of fighting fatigue and to repair damaged cells and boost your immune system.
I do hope I have given you some things to ponder over and hope I have helped in some small way. Tomorrow is another day and there is always the possibility of it being better than today or yesterday.
Thanks for the support, time, and suggestions, guys. To answer some common questions; I see a counselor a couple times per month. My dr.s know of the periods of coping well and not coping well. I've made changes to my life to incorporate this disease. I no longer work 12 hour shifts or night shifts. I work only 3 days per week, and have my kids help with chores. I am constantly looking for something that might help. I eat healthy foods, but my spouse constantly pushes me to eat more. I don't want to eat more. I am no longer exercising and can't imagine that I need a ton of calories anymore. I know stress makes me worse and when I start feeling it and get panicky, I back off, occasionally take a xanax, and turn the other way. I don't whine, but I limp, ice my feet and hands frequently, say ow! when I've got a lightening bolt pain going thru my hand, etc. I don't have to vocalize my pain and misery as it's apparent on its own. I'm thinking about selling my car and getting a clunker. I think about quitting my job which gives me a lot of pleasure. It sits in the back of my mind all the time. Seeing people exercise makes me nostalgic and sad. My spouse works out 4 times per week and I was always the work out queen. All I want to do is escape and I know that's not good. I do try to be positive around the family. Why drag them down too? I got acupuncture yesterday and will continue for at least a month to see if it's helping. I am also changing from Enbrel to Humira asap. I'm just tired of fighting and being motivated it's going to get better and then it doesn't. I will keep pulling myself forward and keeping up the fight as I can. Thanks again for those of you who posted. I really feel the love and support.
I understand completely what you are feeling having lived with this problem for more than 15 years. Please don't stop living your life, but give yourself the break you deserve. Don't push beyond your limits. If you have a loving husband and kids, you don't need to pretend. If you don't feel well, make sure they know.
Giving up exercising is one of the hardest things to deal with, but there are alternatives. Put on some headphones, listen to some great music and go for a long walk. Focus on the music on nothing else. And breathe. You can find a bit of relief this way.
Don't be too hard on yourself. You deserve to be happy, despite these obstacles.
Tyson, thank you for responding, but I can't put on a set of headphones and go for a long walk. That's the point. I can't even go on a short walk. Can you imagine? At 43 I have to prioritize where I'm going to shop and what needs me most. I used to relax through hiking and walking. I used it as an outlet for anger, worry, anxiety, pressure, you name. It was ripped out from under me suddenly. Punishment for taking care of myself, not drinking or smoking or using drugs. Never committed a crime, never hurt anyone. This is my life. The healer needing healing. Go figure, and I am so sorry I am negative. I've been trying to be positive for way too long.
Michelle, I only wish I had a solution that was meant just for you. I am not sure if this wil make you feel any better, but perhaps there is some doctor who will show enough interest in you that he will stop at nothing to find a remedy. Keep searching. Don’t stop. Express your feelings to each doctor you see and tell him or her that they need to stop at nothing to make you feel better.
I went through at least 10-12 doctors and more than twenty-five spinal nerve blocks, nerve ablations,and trigger point injections before coming to a solution. All of these doctors were wrong but I kept searching and searching.
No apologizes are needed for feeling negative if that is the way you feel. You sound like an incredibly strong woman, but you may need some rest so that you can find a solution which I know must exist. Enlist your friends and family to help you find the right doctor who will treat you with the special care and attention you deserve.
After 3rd acupuncture treatment, I think I've had a little letting up of the symptoms. i also had a massage 3 days ago. My feet are worse than my hands, neck and back. I'm limping and walking on my toes or outside edges of feet. 3 days this has been going on. 2 of those days i've worked, in fact training a new employee. I'm on the highest dose of butrans patch and have been taking a hot bath every night like the acupuncture dr told me to do. I hope I'm not damaging my feet by walking on them. My masseuse told me that the middle of the feet ties to the digestive system in accupressure/acupuncture medicine. Interesting, as I've not heard of this before now. I have celiac disease, hiatal hernia, no gall bladder, etc. I wonder if there really is a connection or not. Anyone have anything similar? Plantar fasciitis as part of the PsA? I pray the acupuncture helps. I take 2nd humira shot Saturday after stopping the enbrel. Summer's coming and I don't want to be on crutches missing out.
It is difficult to know if there are any connections to other illness even though many of us have similar health problems. It is easy to get a similar diagnoses which may not be completely accurate, like Planter Faciitis, Bursitis or Tendonitis, lower back pain when it all could be PsA. I was diagnosed with all of these, some with verification but always showing that is was all mild problems, when I was feeling like it was severe the Planter Faciitis did not show up in an ultra sound test but this is what the Podiatrist was sure it was.
I do have a hiatus hernia which I don't think can possibly have anything to do with my PsA because it is related to my stomach pushing through a tear.
Sometimes when nothing is found in tests, and there is continual pain, and when it relates to joints, tendons, sore bones, more than likely it is PsA. PsA often does not always show up on an x ray or with other tests. It can be a process of elimination and this is often when my Rheum then accepts it as PsA. Joint damage will show up, but you don't want it to get to that and your meds could stop that or at least slow it down.
My feet have improved but I can't be on them for long and I have to get off them and rest before I can get back on them again. The more I pushed myself, the worse I got and the longer it took for me to see improvement. Walking on the sides of your feet or toes is difficult and this will put more of a strain on your feet when you don't need any more than you already have. You do not want to cause any further damage or problems with your feet, this is not the natural way to walk which should be telling you that you are not meant to be this way. Talk to your doctors or a PT. The treatment is much the same.
Many people are Gluten intolerant that have Psoriasis or PsA and some have had improvement in removing Gluten from their diet. It didn't do anything for me.
The problem with Western Medicine is they like to categorize our body into specific areas and have different specialists for different problems. There is not the consultancy between the different specialists, so if you have to see a Gastroenterologist for a Hiatus Hernia he is not going to talk to your Rhuemy and unless you have a super whiz of your primary care doctor you will continue to wonder if there are any connections.
Were any foot exercises recommended. Rolling your foot over a bottle of frozen water might help or a hard ball about the size of a tennis ball. There are also rolling wooden balls on a board. You might consider seeing a Podiatrist and getting Orthotics for your shoes which might help.. Yeah I know another expense. I hate to be the one to tell you this, but you might have to look at shoes that will support your feet. They are not all ugly, you might be pleasantly surprised.
I find it takes me several days to get over a strong type of massage before I see any relief. The best thing that I can do for myself is to get into a swimming pool and do gentle exercises, heated is better on cooler days.
The feet and specific spots on the feet are used in Traditional Chinese Medicine and there is the belief that each of these relate to other parts of the body. This method has been used for centuries.