I’m feeling so desperate and low.l am really not coping im having times when I’m managing better and think oh things will work out to the most utter desperation.l can’t cope with this illness. I keep trying but I’m so lost.Stuck in and to tired to get my life back.l see no end to the constant struggle. I’ve got my methotrexate tonight so il be even worse tomorrow.Everyone around me their life goes on.Mine goes from bad to worse.Please tell me things will get better. I’m sorry for moaning as well as your all going through the same if not worse things that I am,but nobody understands and I’ve really nobody else to tell.
Big hugs to you. I'm not sure I'm far enough into this to offer assurances, but from what I've seen and heard, it can get better and you can still live your life to the full. Is there anything in particular getting you down? xx
Things WILL get better!!
Treatment for depression, better meds for your PsA, pain management, and experience dealing with PsA will all make a HUGE DIFFERENCE. In a couple years you might actually be giving support and advice to others in the same situation.
What are you currently taking? All the gentle hugs to you.
I understand how you feel. I was diagnosed a year ago and after months of suffering I started taking methotrexate. It took about 4 months to start working mainly because I wasn’t taking enough due to an incorrect diagnosis. I felt like I didn’t want to live like this, but I kept going for my family. My condition was starting to affect my 9 year old. He started falling behind in school and stopped eating. That’s when I realized that this couldn’t be stronger than me and I changed my attitude towards it. My son deserved better. I can tell you that it will get better but you have to be patient. I know it’s hard to with the pain and fatigue. You have to look at the positives in life and keep a positive attitude. It’s the only way to get through and keep going. Talk to your doctor about your medication and don’t be complacent about your treatment. Do research and discuss with him/her. You have to be very active in the treatment. Most importantly, move. Do some exercise whatever you can do walking, in a pool, a bike or just stretches. It makes a big difference. Good luck and don’t give up. Your family needs you even if they don’t understand what you’re going through.
I know how you feel. I have been home most of the time since April of last year. Since Oct. of last year I have been home all of the time. I am unable to go to the grocery store, church, shopping, or other places. I am not a crier, however, have had many crying spells since last year. I know your depression. People do not understand the disease......except for the people in this support group. We are here to help each other. This support group needs you. We were all put on this earth for a purpose. Let's all NOT give up. We all will have to accept the "New" us but, we can do it. Who knows....you may be the one who discovers help for many of us. Just remember......you are a very unique person. No other person is totally like you. It has to get better for all of us. Hugs and prayers. :)
Why hasn't your doctor put you on a biologic yet? They're so much more effective than MTX.
Ok. I know that I give the same suggestion to everyone who is new to this, but there is a really good reason that I do. It helps! Please get some counseling. PsA and all of the challenges that the newbie has to face are so far beyond overwhelming. You have to change the way you are thinking or you are going to end up, in a corner, a blubbering ball of hot mess. In order to get a grip on the new reality of your life, you will need help. I have an online counselor that I worked with for a month or two when all of this hit. I couldn’t face getting out of the house to do another appointment. This guy was great. He really helped me change the thought processes that were making me so sad, lonely, afraid, angry, betrayed, victimized, hopeless, etc. I don’t know how I would have survived the turmoil early on without Richard’s voice of reason. I also got some great antidepressants. I take them every day; I know how much they help me.
One must accept that bad things do happen to good people. And, no, it isn’t fair, but being angry at life because it wasn’t fair to you will get you nowhere. This is the new normal. We have be horribly betrayed by our bodies, become slaves to pain and disability and it sucks. But, in order to take control back from the disease, we have to find a way to let that go. If we don’t it stifles us, restricts us, and worst of all, keeps us from growing, adapting, and accepting that though our lives must change, they can still be good lives. All of those feelings keep us from living just as much as PsA does.
As with all chronic illness, we have to be strong in order to fight our way through the days, and boy, oh, boy aren’t some days harder than others? It takes time to find the right doctor, the right treatment, and then it’s another long trek to fine tune the dosing. You have to find your strength. Begin by taking small steps to regain control over your life. The first steps go hand in hand, beginning with changing the way you think, and to do this, you need that counselor I have been talking about. You also need to want to feel better. There has to be a desire to change, a need to think differently, motivation to work for it. There also needs to be an appointment to see the primary doctor for an antidepressant prescription. Also make a follow up appointment for 30 days later, so that you can decide together if it is helping and what the next plan will be. Follow up with your prescribing doctor frequently during the invitation of antidepressant therapy. He/ she needs to know how you are adjusting to the new drug.
I can promise you that, if you commit to making these changes, it will most certainly get easier to bear. You will learn to live your life according to the rules of the new normal. You will learn that you can be happy, hopeful, confident, and not so scared.
Again, this was the best thing that I did for myself when I started to have severe symptoms from PsA.
The side effects of Mtx will hopefully get less as the weeks pass by, It did for me and not everyone has bad reactions. Make sure you take your Folic Acid on all other days except for your Mtx day. You do need to see your doctor and ask for help. It is very difficult to get yourself out of depression by yourself and see what other meds you can take until the Mtx starts to work. For people who are depressed the Seratonin levels in the brain drops and you might need some medication to boost them up again for a while until you feel better.. Counselling/Therapy as well as it does need the combination of both meds and therapy to get you through feeling depressed. You won't believe how good it feels to talk about all this to someone who will listen that is non judgmental and is there to guide you to work out your very own solutions on how to cope. It is so important not to stress, as stress will increase your pain levels. It is also very important that you take even better care of your body by eating properly and get plenty of rest, some gentle exercise and get outside in the fresh air and sunshine when you can. Make sure you try everything you can for your pain like ice and heat or alternate them. Have you tried a TENS unit for pain. Vitamin D from the sun will also help. In those moments of utter desperation do something that will lift your spirit. Some examples are watch a funny movie, or listen to some music or do something you enjoy doing if your able to. Do things you can become engrossed in to take your mind of how you feel and this will also help with your pain. Ask your doctor about Pain Management training to help you. Because I live in a different part of the world to most others on this site I don't know what services are available to you. Do you have any help phone lines you can ring and talk to someone like we do in the land down under where I live. When I am having a rough day, I accept it cancel everything and I rest and take it easy and I make sure I have plenty of things to do if I am up to it. I keep a good supply of books and Dvds, some knitting, word puzzles etc. I have learned to keep a good stock of food and plenty of easy things to prepare. I always tell myself that tomorrow could be better and often it is. I hope I have helped in some small way. I wish you well
Hi, we all grieve for the loss of our former selves, its a natural process, but as others have said we often need help in that process and there’s no shame to getting counselling and therapy. You will get there, you are still the same “you” inside don’t let PsA rob you of that x
I just want to say how wise the women on this site are! I love you read your posts ladies! Bella, why do you take folic acid every day except for the MTX dose day? I hadn’t heard of that. I have been taking it every day.
Miss S, do NOT give up. It is NOT time to accept a "new normal" and grieve for your lost self. You haven 't even tried appropriate medication yet. When a biologic works, it can be night and day.
Miss S, it all looks so grim right now, doesn’t it? But as Marietta says, it will get better, and you can help make that happen by reaching out. This is a good place, but you should also reach out to your medical professionals: feeling as you do is (unfortunately) all part of the PsA picture. Lamb started a good thread called “Depression” that you might want to look at, if you haven’t already.
One of the big problems with this disease is that it can take a while to find a treatment that works for you, and they can take a long time to start working. So in the meanwhile, you’re left suffering, and perhaps having to resort to short-term solutions such as painkillers or prednisone. And those come with their own set of problems.
I’m sending big cyberhugs, and thinking positive thoughts for you.
Things will get better once you find the right medicines. It may take some time but they do get better.
I am also sending cyber hugs your way.
To Grumpy Cat and any others that want to know about Folic Acid.
My answer to why I take Folic Acid. Firstly it is what my Rhuemy Rx and it is 5mg and not the .05 which is normally sold over the counter. I thought this was mostly recommended to most patients on Mtx but I have noticed that not every seems to be Rx Folic Acid with Mtx. There are so many benefits from Folic Acid also known as B9 or Folate. It is normally found in green leafy vegetables. It helps to prevent or at least ease nausea that Mtx can cause. It will help the liver function as Mtx can effect the liver and is known to help mental depression. It helps promote healthy red blood cells, repair DNA and nerve damage, prevent ulcers, helps prevent cancer and cognitive decline and is recommended for women before falling pregnant and during pregnancy to prevent spinal deformities. I am sure there is a few more things, but this basically covers it.
Now I know why my mother said to me "Eat your greens they are good for you". I am sure she did not know much more than they contained vitamins and minerals and in some way they helped our bodies. I blindly followed on the tradition with my children and I am pleased that they do the same. Now we can know all the facts in the age of so much information at our finger tips..
I think you Grumpy Cat are one of the many wise women on this site!
Bella
GrumpyCat said:
I just want to say how wise the women on this site are! I love you read your posts ladies! Bella, why do you take folic acid every day except for the MTX dose day? I hadn't heard of that. I have been taking it every day.
Thanks, Bella! My rheum did not prescribe folic acid with the MTX script. So, after reading all of the hints on the board that I could find on MTX, I bought folic acid over the counter, and started 5.6 mg per day for a week, then I started the MTX. Why do you skip it on your MTX day? I haven’t heard of that and have been taking it every day. I guess it doesn’t really hurt anything, but I am curious.
bella said:
To Grumpy Cat and any others that want to know about Folic Acid.
My answer to why I take Folic Acid. Firstly it is what my Rhuemy Rx and it is 5mg and not the .05 which is normally sold over the counter. I thought this was mostly recommended to most patients on Mtx but I have noticed that not every seems to be Rx Folic Acid with Mtx. There are so many benefits from Folic Acid also known as B9 or Folate. It is normally found in green leafy vegetables. It helps to prevent or at least ease nausea that Mtx can cause. It will help the liver function as Mtx can effect the liver and is known to help mental depression. It helps promote healthy red blood cells, repair DNA and nerve damage, prevent ulcers, helps prevent cancer and cognitive decline and is recommended for women before falling pregnant and during pregnancy to prevent spinal deformities. I am sure there is a few more things, but this basically covers it.
Now I know why my mother said to me “Eat your greens they are good for you”. I am sure she did not know much more than they contained vitamins and minerals and in some way they helped our bodies. I blindly followed on the tradition with my children and I am pleased that they do the same. Now we can know all the facts in the age of so much information at our finger tips…
I think you Grumpy Cat are one of the many wise women on this site!
Bella
GrumpyCat said:I just want to say how wise the women on this site are! I love you read your posts ladies! Bella, why do you take folic acid every day except for the MTX dose day? I hadn’t heard of that. I have been taking it every day.
Hi Miss S, just thinking about you. Must be a tough day after taking your mtx. But things DO get better. With this disease – the right medicines work wonders – you will feel yourself & energetic again.
Maybe today you can call your doc for a same day visit. It is worth the struggle of getting there. Tell him how you feel, or just show him your message above if you can’t say it well. He can help with better meds.
So I had done some reading a while back about taking folic acid every day vs. skipping it on MTX day. The idea is that MTX is a folate inhibitor, so by having increased folic acid in your system, it could lower it's effectiveness. I asked my rheumy, she had me take it every day. I take 3mg per day.
GrumpyCat said:
Thanks, Bella! My rheum did not prescribe folic acid with the MTX script. So, after reading all of the hints on the board that I could find on MTX, I bought folic acid over the counter, and started 5.6 mg per day for a week, then I started the MTX. Why do you skip it on your MTX day? I haven't heard of that and have been taking it every day. I guess it doesn't really hurt anything, but I am curious.
Thanks for the answer Stoney!
Thankyou for all your messages,I know I’m not coping well and I’ve spoken to my doctor asking for help.I was on anti depressants for four weeks and then they were reduced as I was having side effects with them and still after reducing the side effects were horrible and if I’m depressed as I’m poorly and they were making me more poorly the doctor told me to stop taking them.Im really up and down in mood when the down takes grip I’m so low I couldn’t get much lower.But then I seem to have moments when I’m managing better with my illness then the depression goes with it and I’m more like my old self.I was a really bubbly person,I don’t seem to be the same person.l don’t look or act the same as I did,ive lost a lot of weight.Im trying to get it back somehow I really don’t want to be like this.Sometimes it’s just overwhelming.I sorry for posting such negative stuff,it must be depressing to read and I do have the guilt that you all have this illness and want to be positive.
It can take some time to find the right medication and dosage, and there are different classes of antidepressants. Just because one didn't work, doesn't mean that you shouldn't try another one. There are even psychopharmacologists (I think that's what they're called) who are specialists in the area of medication and psychology. Check out this link at http://www.ascpp.org/pages.aspx?PanelID=1&PageName=What_is_Psychopharmacology
I know you're feeling poorly. But there's no need to feel guilty about this. It's not under your control.