Feeling depressed with no1 to talk to who understands :(

Hi Sophie

welcome! You are no longer alone - you have found this forum and will make many friends who understand exactly what you are going through. We have our ups and downs (relapse and remission). When you are newly diagnosed it's very scary, all these new words and treatments. PAPAA as mentioned by MrsMop is a registered charity for people with psoriatic arthritis (PsA) and/or psoriasis. They are fantastic, please contact them as they have a great wealth of knowledge. They produce many leaflets both on their website and in paper format covering all aspects of this disease. I'm certain you will find answers to the many questions that will be running around in your head & your fella will find them useful too. If you phone them and speak to David Chandler, tell him Sheila from Carlisle sent ya!!! He is very easy to talk to and a fountain of info. PAPAA have a quarterly magazine and a monthly e-newsletter, I think. Days go by so quickly after a certain age! The annual subscription is £12 and worth every penny. They feature a variety of articles, reader letters and many helpful tips on coping strategies. And of course we are here at the click of a mouse.

As Robert has said, I'm full of admiration for you coping with 2 little ones. I hope your friends and family are supportive, talk to them, show them info. If it's possible I would ask your boyfriend /family member or trusted friend to accompany you to your initial consultations with your rheumatologist for 2 reasons 1. It will help them understand & 2. They can take notes for you as it's easy to forget what is said especially in the early days.

okay here's my list of practical suggestions, learned either from my own difficulties or from this friendly sad (occasionally) , bad (naughty is fun) and completely mad (i thank my God for the crazies who dont take tgemselves too seriously) bunch on this forum. Seriously, I've received tremendous support when low and confused, at times in despair. Here goes -

¦regular blood checks, initially monthly. As you have experienced, methotrexate (Mtx) can affect a small number of people very badly. I developed Mtx induced hepatitis in 2012, very nasty. In fairness it's an excellent Disease Modifying Anti Rheumatic drug (DMARD) and is very effective for most users. I will come back to other DMARDs if you read this without falling asleep

¦keep a record of your blood results yourself, if you ask your rheumatology nurse should provide one. Ask them to complete it for you. I find its useful as sometimes if you're feeling 'off' by referring to your blood results you can see possible reasons eg if your CRP (one of the measurements of inflammation in your blood) is greater than 3, this shows you have inflammation somewhere in your body, not necessarily PsA , it could be a chest infection. Your rheumatology specialist nurse should be able to explain what the readings mean. Remember, these are suggestions only, what works for me.

¦make sure you receive your flu vaccination each year, especially important for you as you have children & children at the age of 5 contract all types of infections, you must take can as the Sulphate zine supreme your immune system and makes you vulnerable to infection

¦get a pneumonia vaccine - PLEASE!!!!! No one told me about this; in April 2915 I contracted severe pneumonia and almost died at 50 years young. It's a lifetime vaccine, one off injection. I beg you, if there's only one thing you get from my ramblings - make sure ìts this one

¦contact the Disability Employment Advisor at your Jobcentre, you are entitled to PIP or Universal Credit, depending where you live.

¦ if you drive or are a passenger in a car apply for the Blue Badge scheme, contact your county council.

¦you are entitled to a disabled rail card which reduces rail fares for you and one other to a third off travel. I think you pay £20 per year

¦ discounted or free bus pass, apply county council

¦if you pay for prescriptions apply for an aannual card, cost is £104 pa. This saves me a fortune

¦fatigue is a huge part of PsA. I was a horrible nasty person who thought people with fatigue were wagging it or wimps. Boy o boy, did I get taught a hard lesson. I explain to others (usually cynics, as I was) the difference between feeling tired ( a nice drowsiness at the end of the day) whereas fatigue is sitting watching crappie TV and you cannot be bothered to change channel, it's too much effort. Also paradoxically I find it difficult to sleep when fatigued. Payback for all my criticism dished out over the years! Best advice I received to deal with this is to go to bed for 30 minutes or so daily, just lie on the bed and rest. My OT believes it's so important that I should consider it part of my prescription. This doubting Thomas eventually (cos I thought I knew best in my arrogance), it really works

¦learn to pace yourself, VERY IMPORTANT. Gosh that's going to be tough for you with your little ones but you must or you will frazzle. It doesn't matter about dusting, it doesn't, it doesn't matter if the windows don't get cleaned or running the hoover round. Harking back to what I said several pages ago, that's why you really must ask someone to attend appointments with you.

Accept that you have a chronic progressive disease; there's no shame in asking for help. I learned the hard way, many tears and tantrums, you don't have to make the mistakes I did. PsA brought me to my knees, physically, mentally and spirituality. The friendship I found here, the love and understanding rebuilt me to a humbler, kinder, much more compassionate person. I learned the posh car, my oh so important career, all the materialistic crappie long gone. Tolerance, love and understanding came my way when I became a flaky, wobbly old crip it doesn't matter anymore, as you can tell I can go on for hours but I really want to pass on the help that was freely given to me. If you want to natter, moan, scream "why me?' I would be delighted to help in any way. I have many tales too of being asked to leave a swimming pool in case "it was catching". Her hee hee. A final word, depression is a symptom of this disease, be mindful of your mood and ask, ask, ask for help. I hope to hear from you soon. And we come to this exclusive club, we are very special people cos we have been given the gift of true, understanding and loving. Be Good to yourself YOU ARE REALLY WORTH IT !!!! Sheila x

Ah Sophie do feel for you my PSA started with the birth of my son who is now 22 like you when he was young I felt useless no one understands as it's an illness you can't see! I went through the drugs your taking and yes methotrexate is awfully I was sick every week with it. I am on ant TNF drug which I inject weekly speak to your Rheumatologist about it it gave me a new lease of life at the age of 35 I an now 55 if you need to chat more contact me I've only put a little of what I've gone through and what drugs I have taken over the year's xx

Thank you to everyone who has commented I'm so grateful xx

Visit your GP and ask for help from IAPT they provide a great service for people who have long term medical conditions. You will learn great coping mechanisms.

Good luck

Joy

I am sorry your bf is not being supportive. I will say, at your age, it is very important that you remain active. Sulfazalazine made me extremely ill, so I recently started methotrexate, and not doing bad...according to my rheumatologist, it is a step up. I am 3 1/2 weeks in, and the first week, I was very sick to my stomach the day after, 2nd week diarrhea day after, 3rd week. diarrhea 2 days after...I do pill form, but there is the option of bypassing the stomach and doing shots. I am a believer in less is more if it helps, but I have lived for years with pain and generally have done okay until it started interfering with quality of life. Everyone reacts differently, has different side effects, and while a med may work for one person, not so much for another. You are very young, and I am so sorry you are experiencing this at your age. Don't give up hope, even if one med doesn't work for you. Quality of life is very important, and you are lucky to have a diagnosis early on so you can do research and find what works for you before too much damage to your joints. Unfortunately, there is a lot of misinformation out there, and everyone believes they have the cure with a simple diet. That does not mean you shouldn't experiment with different theories in conjunction with the your rheumatologist, but remember that when you are inflamed, there can be damage. If you are seeing an MD rather than a rheumatologist, just think of it this way: I wouldn't go to a barber to have my hair highlights done, nor will I see my MD to take care of my autoimmune disease. You also need to realize that your children may very well have this disease. You didn't mention whether you suffer with psoriasis, as well? I was told both sulfazalazine and methotrexate can take months to take effect.

Hi Sophie,

I know exactly how you feel. I'm 25 as well and was diagnosed a year ago - it holds me back from doing a lot especially socially because I use every ounce of energy at work. The people around have to be really understanding considering the condition you have and I find that most people who care are very understanding in the end (though I only tell those really close to me).

Anyways, know that there are other people going through what you're going through!