6 months in...

Posted Fri 4 Sep 2020 10.26pm by Laura

Hi I have found this site after having another pointless doctors telephone appointment. I’ve struggled lately I have been diagnosed with psoriatic arthritis and fybromyagia.

I am only in my 30s and have 3 young daughters and thought maybe sharing my story with similar people might help me cope with my new life.

One day back in March I woke up with a headache and pins and needles in both of my hands I pushed through with my morning and did my school runs and went to work, did more school runs and took my 3 girls to their after school clubs. By the evening I felt like I was coming down with the flu. I woke up in the night and neither of my hands would open and close fully and they were swollen.

In the morning I went to A&E and had a CAT scan and I was told I probably had an allergic reaction and was given steroids and anti histamines and to come back in 2 days if there was no change.

2 days later I returned and the doctor now thought I had a rhymatoid problem and told me to contact my GP to be referred.

Luckily I had private health care and saw a rhymatologist a week later, by then I was suffering with insomnia, lack of appetite, fatigue and cramps in my stomach, he referred me to a neurologist and said I needed x rays and ultra scans. 2 days before the scans were going to take place they were stopped by Covid-19.

I saw the neurologist and had an MRI scan which luckily ruled out MS.

During this time I was given 4 3 week courses of steroids- when I was on those I felt a lot better!

Eventually I spoke to my rhymatologist and was put on Amitriptalin and then sulphazalazine.

I have now had a bone scan and xrays which has come back ok. But my calcium levels are low, even though I am now taking calcium tablets.

I speak to a nurse from the hospital once a month and have fortnightly blood tests. But nobody really knows what to do with me. I am absolutely exhausted I sleep maybe 3 hours a night and feel like I have lost my life. I was a really busy social person. And now I’m struggling with constant headaches- I’ve been told the nerves behind my eye are inflamed cause Ing headaches and pain and my mainly hands 6 months on still don’t work- I can’t do basic things like squeeze toothpaste, open bottles and doors. But my back, neck and knee like to join in sometimes.

I feel a bit forgotten and don’t just want to moan when I speak to people but I feel like I am grieving for the person I was. I have tried every step of the way to be positive and I have always managed to pick myself up previously but I have really struggled this last week with the pain.

If anyone has any advise I’d be grateful

Laura

Posted Sat 5 Sep 2020 0.37am by alanrco

Hmm, does sound like an auto-immune disease but I'm perplexed as to why you have been diagnosed with PA.? The classic symptoms of PA usually start with the psoriasis., painful fast growing skin lesions, the arthritis can start later, but not for everyone who has psoriasis. You have not mentioned this skin condition. Fibromyalgia is not a real illness, it's just a label given to people who suffer a variety of undiagnosed problems, mainly fatigue, pruritis etc. It's a medical cop out!

It does sound like you are going through a very rough time but the important thing is that you get an acurate diagnosis so that a better directed treatment helps you through this.I have suffered many years but although there are ups and downs there is frequently light at at the end of each dark tunnel. Feel blessed that you have three lovely daughters and try to stay positive.

Don't try to be who you were, cut back on your work load and don't get over tired. Many things we think have to be done are not going to change the world if they don't get done. Pace yourself!

My heart goes out to you,

Alan

Often when you start with horrendous symptoms of an illness the effects can lessen over time as your body begins to accept and accomodate these problems.

Posted Sat 5 Sep 2020 10.55am by Laura

Thank you for replying. I had two terrible episodes of Psorisis when I was 17 and 18 my whole body was completely covered I looked like I had been burnt and had to have UVB light treatment. Since then I have had it in my nails and on my scalp and only rare tiny patches on my skin.

I’ve got severe asthma as well- the doctor did tell me that if you have one auto immune disease you’re likely to have more.

I have stayed really positive throughout it’s just in the last 2 weeks I’ve felt incredibly ill and I have started giving up on the medical system. It’s exhausting chasing up the doctors and hospitals who don’t communicate with each other.

I think the consultant thinks because the steroids make me feel almost normal apart from my hands not working, that that’s a sign an immune suppressant drug will work. Who knows what their thinking is. Because of the current situation I haven’t seen anyone in person since March I think it’s quite a complicated problem to explain on the phone.

Posted Sat 12 Sep 2020 9.02pm by patis

Hi Laura. My psoriase symptoms started about 2years ago, and in April I developed PA,. About a month later I find Amy Myers book for all kind of autoimunes. I started with the diet prescribed, cbd oil and bluberries. Iam now still keeping the diet, out of cbd oil and out of symptoms just left with psoriase on my neck nothing else.

Posted Mon 14 Sep 2020 6.28pm by Kayleighlou_92

I’ve had psoriasis for 13 years and after suffering for the past two years with severe joint pain I was finally diagnosed with PA. I had all the routing blood test and x rays also MRI. I’m waiting to start my treatment. My psoriasis developed in my nails around 18 months ago! I have suffered for 13 years with the skin condition but then after a severe accident at work and causing long lasting damage to my back it seems the PA developed

They say there is a trigger. I’m in pain daily and have 4 children under the age of 14 to care for and I to find it very challenging. The same with the opening of doors or any type of squeeze even holding a knife and fork can be painful. Some days are better than others.

I know it’s really hard by trying to keep positive can really help. The good thing is to know your not alone. I’m now starting my appointments with the rheumatology nurse to start some treatment. With all the COVID 19 everything kind of got put on hold. Hang in there though.

Posted Fri 18 Sep 2020 5.48am by LadyJay

Hello Laura

You are not alone, please know that, if ever you want to chat reach out ❤️

I was misdiagnosed and asked for a second opinion which revealed I have PsA after many appointments and trying different drugs I now take Methotrexate 20mg weekly and Amgevita (biologic) 40mg fortnightly, awhile back I came off all meds but that didn’t work, so reluctantly had gone back on them.

You must keep trying to get a clear diagnosis to help you get the right treatment and I agree that since the world stopped in March many of us out there have been forgotten, but we understand why, but that doesn’t make it any easier.

Have you had your blood tested? If you are told they are ok, don’t just except that, in all this time my bloods never show any inflammation markers, but my hands don’t work / they are very swollen/ back pain is new and debilitating/ fatigue is a real issue for me and now I do what I can and I don’t push it, but I feel for you with three daughters to take care of, my granddaughter is 9 years old and after a day with her I am exhausted xx

There is a company called the Oil Hut and they have an oil called ease it, you massage it in anywhere for 2/3 minutes and it seems to be helping my hands I use it as I settle for the night and find my hands are not so stiff in the morning I use it on my toes which is a great help as they become really swollen.

Take care of you and be kind to yourself a lot, I hope things settle and you get some answers soon.

Sue

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