Life
ankylosing spondylitis) is a bloody nightmare, I have fibromyalgia/ osteoporosis of my spine/ tinnitus/ alopecia and had all my teeth out as had issues from the biologics I was on and I struggle with dentures/ have burning mouth pain and burning lip pain and gut issues and gut issues,now I have my right wrist painful I don’t see a physio till middle of August earliest appointment, I am right handed so having to ask my husband all the time for help and understanding from anyone is another nightmare as no one understands it.it challenges me, it takes to me to pain that normal people can’t even imagine, it try’s to destroy you as as a human/ it changes your life completely, if you don’t have just one of these conditions you don’t understand the mental/ emotional and physical and the depression to just give up a lot of the time and how it erases your soul and your mental health and the physical health you had the independence you had, the social life you had the gym, your work it completely destroys you as a human being, and destroying your relationship your grandkids who hardly see there grandma, your daughter hardly sees you and your husband has his own health issues mental and physical.
It tears you apart you loose you who you were what you wanted to be and you can’t out for a few hours without pain, days away/ holidays the list goes on, just getting out of the front door is an accomplishment never mind driving as I can’t do that anymore, my height have lost so much so I can’t drive, the gym years and years ago I loved it but to go and experience so many things that I miss is very depressing.
This and more is AS.
I am 66 it happened at 62 just like that overnight like a switch been turned on my husband drives me everywhere I loved driving like I used to love gardening spending time with friends which I don’t have now as I can’t make birthdays/ anniversary’s/ or even away for a few hours my husband misses me I miss me and he says
His life is passing him by,I understand that but I have no life either I am stuck in the house, least he can drive, take photos which I could do but can’t now only with my phone,and he volunteers once a week at a nature place for a couple of hours one day a week,I am friendly I miss talking to people he is the opposite to me and finds it hard to use the phone, talk to people but likes going out with me when I can but also like his time,
Sorry my mood has been like this for awhile and my thoughts are just all over the place,why is life so painful what did I do to deserve this, was there something i did if I did I don’t no, no one deserves this not one single person.
My support is my husband we have each other as no friends nothing I hope it’s me that goes first as my husband has sisters brothers and four grown up children, I have my daughter she has two children and her husband and his family which is big.
She has no brothers or sisters.
I live in the uk if anything god forbid happened to my husband I couldn’t stay in our house it’s council and we have a lovely garden my husband did this and I would miss it as I would be sent to live in a care home.
What a way to go…..
I just want to add this to the forum I posted ( Life.)
Not feeling that great, depressed / stressed/ and fed up, after today I need to vent and this I think should be added.
I know I go up and down but today is a down day.
Life has a habit of throwing a curve ball and here we are.
So for three years with the NHS, I sought opinions, waited, explained myself, repeatedly ,and I still feel stuck feel angry, and exhausted,I have never had a proper explanation and management plan-going forward, with AS and my skin, I try and explain family history but makes no difference,clinicians haven't yet found the answer to my skin issues and at this rate never will i think.
I had two infusions of infliximab in 2023, then shortly after developed widespread skin problems, and now have two ongoing skin conditions.
The symptoms are ongoing
and affecting my quality of life.
What can i do about them now?
Rheumatologist keeps saying a coincidence, recently I was told it might not be hidradenitis suppurativa) and folliculitis and Gp isn’t sure what the diagnosis is. I spent three years believing there was a diagnosis and then discover last week there isn't a clear answer only last week, HS and folliculitis not 100 percent now I was told.
I am frustrated that professionals involved haven't been able to explain it or agree on what's happening to me.
My skin changed after the infusions I know that and has never gone back to how it was before.
I know that people with inflammatory conditions can develop skin conditions but as this happened quickly it’s nothing to do with that.
I developed serious skin problems after infliximab, I'm still living with them three years later, nobody is even certain what the diagnosis is, and I'm not prepared to take another biologic until that is properly addressed.
I need someone to acknowledge what happened to me and help me sort out my skin before I can even think about more biologics but i doubt that will happen.
I always ask questions, follow up appointments and advocate for myself and that uses lots of my strength and my energy, trying to get answers but no one ever listens.
I get so frustrated,overwhelmed and tired of repeating myself.
Three years of dealing with my symptoms, uncertainty, appointments, delays, and feeling like I am constantly having to explain myself it's not surprising that it's affecting me emotionally and mentally.
At 62 when the rheumatologist said i am atypical for AS, and i went from being one version of myself to suddenly living with chronic pain, medical appointments, medication decisions, skin problems, and uncertainty, that in itself is a massive
adjustment. The 24/7 pain. The fatigue. The loss of the life i expected.
The merry go round of appointments. The feeling that my body has changed forever and never went back.
I can’t even wear a bra does anyone understand how this affects myself as a female.
it doesn’t help my clothes don’t fit as my back is curved, in 2020 I was looking forward to my daughter her wedding I bought a beautiful dress I bought loads of make up it was so much fun this was in 2019 and then struck I don’t want to say as that word I hate and all changed I used to drive I can’t drive I can’t do gardening I loved that I loved walks with my husband taking my camera out I can’t do that I was doing loads but now I sit watch tv, I walk a little but it’s painful,my husband we are 67 goes out to take photos as he is my main carer and he has no life either with mental health issues so yes because of that word ( vaccine) life changed and it made me cynical/ angry/ no trust a different person.
I know I had AS when I was younger I must have but the trigger well……
My heart really goes out to you. I hope you and your husband are making your mental health a priority during this difficult time. Please remember In the UK, where you live the national Crisis and Suicide Hotline (https://spuk.org.uk/national-suicide-prevention-helpline/) The number is
0800 587 0800. If you or someone you care about is experiencing an emotional or mental health crisis needing immediate attention, you may also reach out to your GP, the GP out-of-hours service, or call NHS on 111.
The other topic you bring up is your skin issues. I don't know if this article might be useful in your situation, but histamines, which can be triggered by allergies, seem to have a link to autoimmune conditions, such as Axial Spondyloarthritis. Perhaps this might be worth a review with your doctor, if you haven't talked about it already.
Thinking of you, Kathy (Team member)
What is hydro,,- sorry feel stupid for asking. It's Shelley. I am just looking for any help. I feel a lot like you. If you ever want to talk I would
Signed , 60 yr old woman-feel like I MAY PASS SOON. I AM JUST SOOOOO TIRED. ALL THE medical crap is overwhelming-,just tired. ShelleyHello Kathy, how are you? So very kind of you, I do try, healthcare in the uk is sorry I am swearing but the bloody area I live in is zero, nothing here I wrote to the government did I show you what they said I can’t remember I can copy and paste it for you.
Last week I found out that after extensively explaining to a GP how I am managing with the skin issues and the AS and weird symptoms runny nose/ streaming nose that it’s hay fever I know it’s not…. The skin she tells me a doctor now not sure if I have HS or follicuties I don’t know if I coming or going.
I am sorry you’re having the same situation in some areas I know you pay for your medical care so it really shouldn’t be like that.
I did see an AS physio as well only been waiting three years for that, she tells me my AS is just 40 and moderate so not good but guess what I am allowed six sessions of hydro then it stops if it doesn’t help then I need to speak to rheumatology about biologics which I do not want, it’s a battle I hate it and today enough is enough if I could drive away it would be good but I can’t even drive now, if I had a passport maybe I would leave the country haha all dreams I can’t do, fed up of people telling me about there holidays, just going outside is a massive effort, I feel stuck in a cog going nowhere, merry go- round is how I feel going round and round……Hang in there! It is so hard when doctors tell you one thing and then change their minds. Please take care of yourself, especially your mental health, which always seems to be impacted when living with a chronic illness. You've got a great attitude, but I am sure all the nonsense with your doctors is a lot to cope with. Thinking of you Kathy (Team member)
Hi Jan, what is hydro? Sorry it's Shelley again. Is that pool physical therapy? Thanks my friend-sending peaceful thoughts and prayers. Shelley
I can totally relate. The peripheral spread happened overnight a year ago. No relief yet. I was diagnosed at 24. Before that UC which ended with a total of colectomy. I have a j-pouch. I have ostero and scoliosis. I have had the wrist pain. I bought a wrist carpel tunnel band. Shoulder, neck, hips,knees and ankles. Shooting nerve pain. On Humira no improvement. The entire thing is overwhelming. Can't do anything I loved to do, husband driving. Jaw pain,gum issues. What you described is me too. Anxiety and depression creep in a little at a time. I have been losing hope more and more. I try to pull myself out of it and pray. Now my eyes are horrible and I have to go to a dry eye clinic. On and on it goes. Try to stay strong and I will try to also. Your friend, Shelley
Hello Shelly a lot of what you say I also can relate too.
You were very young, I had never heard of it had no idea I had it till I had the vaccine, I have fibromyalgia I was managing with it but still doing things, this changed everything totally, I can’t even were a bra I know that is random but it’s true, body shape and the rest yes you have a lot, have you children/ grandchildren/ I have osteoporosis of my spine as well and mechanical back pain/ tinnitus/ it gets louder when I say it lol 😂 sorry my sense of humour I think I haven’t lost that as yet.
I have Alopecia too and my back is bent but we are alive,I like to take photos but can’t lift my camera I take photos in the garden with my phone it helps but winter coming so not sure what to do.
Where are you from?
Yes saw a rheumatologist different to mine he did ultrasound scan said at the time of going inflammation has gone down, it took ages for an appointment so said when it comes back I should take photos to show well yes but an appointment haha probably months away.
That biologic rhum said is the best and pushing me on it but I had in 2023 infkixmab two infusions it changed my immune system I am now left with two different skin Infections one is HS and other follicties can’t spell it,my skin my face body can’t tolerate anything but water no make up nothing, my arms/ legs/ stony/ back/ face etc have scars left from these spots that come up like boils and any day they happen, I am waiting to see a dermatologist again I have no idea 🤷♀️.
My body is a mess, gum issues I know I can’t handle the dentures/ burning mouth, I think, eyes blurry, red sometimes but I do what to look for with eyes.
Yes gym driving it’s all taken away i understand and it’s grief and acceptance which I still struggle with.
Anxiety and depression yes now they are but didn’t before, my husband has ADHD and severe mental health he can’t cope as it is and looking after me makes it worse I know we talk about it nearly everyday which I don’t want too but I say nothing I can do with it.
I will do my best and you too. Sorry for long post.
Big hugs Shelly 🤗💖
