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 donât 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 canât even imagine, it tryâs to destroy you as as a human/ it changes your life completely, if you donât have just one of these conditions you donât 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 canât 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 canât do that anymore, my height have lost so much so I canât 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 donât have now as I canât make birthdays/ anniversaryâs/ 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 canât 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 donât no, no one deserves this not one single person.
My support is my husband we have each other as no friends nothing I hope itâs 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 couldnât stay in our house itâs 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 goâŠ..
Also Jan I understand your doubts about biologics and your skin. I am worried I could lose my eyesight. Is it worth it. And of course there is no answer and it is brushed off (my eye problem). I have seen 2 eye doctors- differing opinions and I still don't even know if it's from Humira. No uveitis though. My vision is blurry and my eyes burn. I am going to a dry eye clinic in a couple weeks. I have Osteosporosis too and few other things. I feel your pain my friend. I do thank God for all my blessings and after I will add us. Shelley
Thank you for being such a supportive community member. I am sorry you are experiencing eye problems. While some biologics can cause dry eyes, eye problems can also be a comorbidity of AxSpa. I'm glad you don't have uveitis. Good luck at the dry eye clinic! Allthe best, Kathy (Team member) Hi Shelly sorry just seen your other message.
Have you been to the dry eye clinic ?
Yes my skin well it was fine beforehand I had the occasional spots but this on top really doesnât help and started straight after the two infusions in 2023 so I know itâs a paradoxical reaction even though they wonât admit it.
How come the eye doctors donât know? What does your rheumatologist say?
So glad you donât have uveitis.
Yes osteoporosis on top a long list of everything.
Take care Shelly
Thinking of you.
Big hugs đ« đ
Jan
Hi Jan, I just want you to know I have been thinking of you over
In the UK. We have so many battles that are similar. I have been trying to stay away from screen time. My eyes have bothering me so much. They swell up and are so dry. Right now I don't know if it's from the biologic or from inflammation. My biologic can have a paradoxical effect on your eyes. I also had to have oral surgery from a gum infection. I am still trying to figure out if this biologic is helping more than hurting. (Adulimab generic for Humira). I also have fibro like you. I can not be the person I used to be. I am 60 and feel like 80. I think back to year and A half ago and how good I felt. The pain is unbearable at times. I am so frustrated. I also feel bad about not being the wife I used to be. Low self esteem and quite depressed. I feel for you and understand. Some days at
Are up and some very
Low. I will pray tonight for both of us. What meds are you on? If you can get them. So sorry about the poor healthcare at a time when you need support the most. Thinking of you. Your friend, ShelleyHi Shelly awww bless you đ, the battles continue though and yes i need to do that, i know I am definitely on my phone more than I should be, but before AS I didnât have problems with my eyes not red and blurry I am short sighted but I didnât need glasses to wear a lot just very occasionally but now itâs different, I need to mention this at the next rheumatologist appointment when ever that is,it could be from both I donât know, oh you on the one the rheumatologist wants me on I read about that one.
When did you get AS? I was 62 now 67 feel like you and all the conditions donât help do they?
Itâs very difficult and frustrating but I understand we canât help been the wife we were itâs not your fault and no ones fault it happens and I understand itâs very very difficult having pain severe 24/7 and how to manage it, up and down honestly is normal I am more down then up honestly.
My husband has mental health issues and ADHD so he stugggles and he finds this condition and the others very hard to understand as we canât do what we used to do and life throws day to day pain, stress as he always stressed and then I get stressed he is 67 too and sees no future, I canât and refuse to look at it that way I take each hour/ day and thatâs it but he canât thatâs another battle.
Thank you đ.
I am not on anything I do my best without when itâs fierce I take naproxen very occasionally I donât like it as most meds affect my stomach, I use CBD I buy itâs expensive not sure it works but I buy it, it only has a tiny bit in and more ginger/ campour/ black pepper.
I use tens machine too.
Itâs the way NHS right now just gets worse every day,services in Northumberland where I live so much worse.
Take care Shelly, take good care of yourself anytime just message me big caring hugs đ« đ
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 isnât 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 itâs 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 canât even wear a bra does anyone understand how this affects myself as a female.
it doesnât help my clothes donât 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 donât want to say as that word I hate and all changed I used to drive I canât drive I canât do gardening I loved that I loved walks with my husband taking my camera out I canât do that I was doing loads but now I sit watch tv, I walk a little but itâs 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 wellâŠâŠ
Keep at it, Jan! You are a real warrior. Warmly, Kathy (team member) awww thank you Kathy I try my best I always do but government never listens, but I keep trying.
Thank you I think I am always a battle isnât it.
Take care
Jan
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. ShelleyI wish we could offer more support for you, Jan. We are a US based website and really have limited knowledge of the UK healthcare system. However, I've been seeing comments from many community members who are in the UK. If you are willing and have the time, I'd like to invite you to sahre a bit of your story and your difficulties with the UK healthcare system on a forum: https://axialspondyloarthritis.net/forums. I'd love to connect you all so you can share UK-specific information. Maybe someone will have a worthwhile tip for you. Thinking of you, Kathy (Team member)
Kathy you offer more support here then the uk health system you really do.
And yes I am willing and will like to join please, sorry I didnât see this till today.
Thank you very much Kathy đđ
