Feeling Scared
Posted , 7 users are following.
I have had psoriasis since I was 15 years old and now at 40 I have psoriatic arthritis. Recently diagnosed and waiting to be formally diagnosed. I have all the symptoms and I am doing everything I can naturally until I can get proper medication. I am experiencing depression and overwhelming sensation that this is the beginning to the end the most painful way. I don't see hope or getting relief. I have a sixteen year old a husband who travels for work. I want to find a support group who will help me find HOPE.
2 likes, 15 replies
hail72 loreta46974
Posted
Same here I got psoriasis about that age and now have psoriatic arthritis. I am in my 40s but got diagnosed about 8 years ago now. On medication its okay, I find that I get very tired, which then makes me very low. I have a 9 year old daughter. You are the first person I have replied to as i have just joined and want to talk to people in same situation as myself. Happy to chat it's hard at first reading up on the different medications and just taking it all in. Hope you get medication sort soon.
loreta46974 hail72
Posted
Thank you for your reply. I don't want to be a downer nor negative about this condition. I hope you find relief and stay positive.
geraldine87987 loreta46974
Posted
Ah Loretta I have had PSA for twenty years I'm now 55 there are some great medications now so don't give up hope! I'm starting to become immune to mine so the pain is slowly coming back and frightens me so much. I do have some great family but I'm on my own and feel so isolated at times!! Unfortunately we have a illness people can't see so are judged I allways try to look my best struggle to do so but have done it all my life!! I'm not sure what life holds for me but it's great having this site for support xx
loreta46974 geraldine87987
Posted
Hello Geraldine! I am glad I'm not alone here and I appreciate your reply. I am praying everyday
Jay_40 loreta46974
Posted
Hi loreta,
I'm 40 as well and just been diagnosed after 2 years of agony. Had my first visit to my rheumatologist and he put me on sulphsalazin straight away with injection and 500mg dose per day for first week and then increaseing dose 1 more tablet per week. I'm currently on 4 per day as well as all other meds, gabapentin, Co codamol, dihydrocodine, naproxin and omeprazol. I've currently just returned to work as a chef but was advised to take 3 months off to let the meds take effect..
There was no way I was going to take 3 months off work regardless what they advised but I did go through a lot of depression at the start and once diagnosed.
With a lot of reading and lots of interaction on sites like this you will find this is by no means the end and just a rather messed up bump in the road. Hold your head up high and fight this head on. Try to stay active but give yourself a break when you need one.
There are lots of people in our situation and lots on here are friendly and will offer what advice they can and share what they have been through and at what stage of the disease they are currently fighting.
Take care and feel free to express yourself and let people know how your doing ??
geraldine87987 Jay_40
Posted
Hi Jay just wanted to say what a great response I've been on and off this site but needing it more as this disease takes more control and I become immune to the drugsame great to know people understand x
Jay_40 geraldine87987
Posted
Hi Geraldine,
Thank you, all of us on here know all to well how other people dismiss your situation just because no visible sign of an illness. I have 3 children ages 5 3 and 10 months and I fully intend being active thru out all of their childhood and adolescent years . Some days are tough and others are hell and you got to fight the urge to stopand sit down because you know you'll be in more pain when you want to move again. But then you get good days and sometimes can get out of bed and down the stairs like any other normal human beings and it proves there is light at the end of the tunnel. You just have to find your balance of what your body can take day to day and rest when your body tells you.
I started on sulfasalazine 5 weeks ago and aren't really feeling any of the benefits from it yet, the rest I had from work I spent trying to find my limits and evaluate how I could go about day-to-day activities, work and routine without actually folding and saying I can't do this. Some days your not gonna get everything done but don't give in... Make the tasks a must do for the next day and take it from there.
In my own personal thought I find life with this disease seems to be just that little bit easier when your thinking positively than it does when your negatively hating life and the path you've been forced to walk. Let others around bear the load sometimes, talk about it more and most importantly still be yourself and greatful for all you have ??
loreta46974 Jay_40
Posted
Lisa_Batts loreta46974
Posted
Hi Loreta
It is quite natural to feel depressed and scared right now but there are many medications which once they have got into your system and work are really good so have hope for the future.
One thing I will say is it a debilitating disease and the medications can also have some unpleasant side effects until you get used to them. The beginning of the end is if you don't get diagnosed..... Being diagnosed is the beginning of getting better 😊??
It took me a long time to accept I have this but once you've done that, been put on a medication which works for you, you will be in a far better position than you are today. You may have to change your lifestyle to accommodate this illness but it's not the end of the world. You will still be able to do most things you do now but will have to learn to rest more in between to enable that. That's not such a bad thing either.
Everybody is different. Some people carry on through life the same as before but some people, like me, need far more rest than before. You learn to adjust though.
I think waiting for your appointment to get medication is possibly the scariest bit because you are 'in limbo' probably with many questions. Once you start on medication you will finally feel you are moving forward.
Don't be too hard on yourself. What you are feeling right now, horrible as it is, is quite normal.
Be good to yourself, rest more and remember you are still untreated and that is very debilitating. Don't be afraid to ask your family to help you.
This forum is great but there are also other places like Arthritis UK who have good information, excercises etc to help.
Take each day as it comes. Baby steps.... The first being so what your body tells you too. If it tells you to rest, then rest. Hot baths and ice packs can help relieve the pain until you get put into your medication and after.
Good luck. Try to keep positive...
Lisa
??????
loreta46974 Lisa_Batts
Posted
Lisa_Batts loreta46974
Posted
Good morning Loreta,
I think most people reading this understand exactly where you are at and how you are feeling. My brains a bit foggy this morning but did you say you've been diagnosed and are awaiting treatment? My rheumatologist diagnosed and gave me treatment to start the same day. I'm wondering if you have a follow up appointment? If not phone your specialist/or secretary or go to the doctors and find out what's happening. It will also give you a chance to discuss how you are feeling. They may be able to prescribe something to help in the meanwhile although I would say unless you are prone to depression how you are feeling is perfectly normal for what you are going through.
Unfortunately it's a sad fact, that many will agree with that you have to fight to get early appointments. I think once you are put on medication at least you will feel you are moving forward so find out what's going on. Unfortunately to the hospitals a 3 month appointment is acceptable where to us, individually it is every moment of every day. You need to stress how depressed you are and that you aren't coping. You can also get yourself out on an emergency cancellation list. Please talk to your doctor to get things moving.....
In the meanwhile don't forget hot baths and ice packs.
Sending you positive thoughts
Lisa 😊??
loreta46974 Lisa_Batts
Posted
Thanks Lisa , I have an HMO so need a referral for everything! It's a process and I am waiting in line. I am also experiencing ovarian cysts so I have to take care of those as well. I feel depressed and have never suffered from depression before. This disease is tough and sad and now my reality! I don't know about your faith but I am having a difficult time accepting God sent this my way with good intentions. I have been prescribed a medication to sleep that works really well and takes away my pain as well the minute I take it, but it's used to treat insomnia and I can't take it during the day because it does make me sleepy.
Lisa_Batts loreta46974
Posted
Hi Loreta,
I do so feel for you as I've been exactly where you are. When you say HMO.... Are you in America? I didn't know you could have that insurance in England... If you are then obviously it completely changes your pattern of seeing specialists etc. However the illness, how you are feeling etc is the same for most people diagnosed with this awful disease. Your are questioning everything now including your faith, no wonder your poor head is spinning. I would say (although I may not have the same faith as you) that I believe some people are given a lot more in their plate than others because they have the strength to get through it whereas somebody else may not. The doctor has given you something that takes away the pain but obviously you can't take it in the day as you fall asleep! I still think you should go to the doctor and get something to help in the day. I was given Valium whilst waiting to be diagnosed as my head was spinning and I was keeping so busy, not giving myself time to think about it, I was making the pain worse.
Have you got good support from your family? Telling them how you feel may help. Again I think you will feel more positive when you are started on treatment and when it starts working you may be one of the people who can pretty much carry on as before. Everybody has such a different journey... You are right at the beginning of yours which is the worst bit because you are hurting, fearful for the future, need pain medication and your brain has probably imagined every scenario in its worst state..... That's natural. Once you start moving forward, in medication etc things will start to improve. Remember for a lot of people who are put on the right treatment life goes on. Please try (I know it's hard) to focus on the positives. Being diagnosed, having a loving supportive family, knowing there is treatment to help you and with that you will be able to do more and be in far less pain are all positives. As I said I don't know how HMO works but I would be kicking butt right now to get started on treatment!!
Use your faith to help you. Yes you have every right to be angry but try to find something you are grateful for every day. A roof over your head, food to eat, sleeping pills!! (😂
Things will get better
Regards
Lisa ????
angela22608 loreta46974
Posted
Hi Loreta, reading you post, I feel I am in almost the exact same situation. Recently diagnosed but waiting to see rheumatologist in a couple of days to have it confirmed. Been off work and struggling to stay positive. Have down days when it all feels hopeless then better days when I'm determined it won't beat me. The worst bit is my two children constantly asking if I'm still in pain and when I'll be better. I'm a similar age to you (42) and feel that we cant let this beat us. We have hopefully a long life ahead of us and I want to lead as normal a life as possible. I'm hoping to learn some ways I can help myself stay healthy with diet, exercise etc. Nervous about getting a formal diagnosis like you but once we know perhaps that is the time to make determined choices about how to move forward and learn to live with this. Hope you find the support you need. Good luck with your specialist appointment. Stay positive.
loreta46974 angela22608
Posted
Thanks for your reply Angela. This is going to be the toughest battle for me and I don't know if I am prepared to face it but it's what God wants for me and I have to sort that out with him. I hope you find some relief and get back to your children who need you. I don't think I would be willing to fight this disease if it wasn't for my son who is 16 but still needs me.