Jan 58's Status Updates

hi Rebecca it’s really weird, the nurse practitioner I saw said well after couple days you make an appointment and should of wait six weeks I couldn’t believe the attitude, they have no clue, no we don’t have one an air purifier I will look on Amazon yes I did think it could be that. I spoke this time to the Gp yesterday who said tests last year were ok but that’s got nothing to do now, this is this year!!!
I know one thing after another arggg.
Take care dear friend.
Thinking of you hugs.

Oh Jan I feel for you. A sudden whoop-like cough can really shock the body, as you say pulling muscles. I know my mid back gets the worst of it when this happens. Do you have an air purifier in the house? Maybe dust or irritants managing to get in your lungs? If it gets worse do see the Dr. again. Could be the start of something. Don't need another thing to sicken the body. Stay well friend. Thinking of you. Rebecca (team member)

Hi Friend. I just saw this post - been a week since posting it. Thinking of you and wishing you better health. Warmly - Rebecca (community moderator)

hello Rebecca how are you feeling?
Ahh no problem thank you for that.
Your totally right about that we do and so it’s so difficult.
Thank you, he is getting stomach and headache but he is persevering with it.


Oh I so sorry I didn’t know that,I am glad her cough is getting better that’s good news.


Yes that’s what I do I read up on a lot so I can understand and they help myself, today I had a call with the consultant as I questioned about the med for me, it was just like been back at the other hospital, I don’t know what I am talking about and this drug is the only one you can have and that’s it, also he said I shouldn’t be ringing up all the time !!! I only have rang twice and questioned the nurse first to see if a different drug and then told him about my vision blurry still it’s got worse past few days, this drug can also effect your vision and can cause blindness but he isn’t listening like they don’t listen. I am seeing the optician on the 2nd Jan,
When I spoke to the nurse I said about the vision issues and she said you haven’t any, I said I had I wrote it down and the rheumatologist at other hospital knew.
But they don’t listen.
You take care Rebecca and have a lovely Christmas and new year.
Big hugs and look after you.

Hello! First off, I wanted to give the correct link to journaling ideas - https://medium.com/ - Not sure what happened there.


Secondly - thanks for responding. Every day we struggle with the neverending pain and overpowering fatigue of chronic illness/es. Finding the will to continue to move forward through the thick of it is our goal as well as finding a solution or treatment to ease the suffering.


I hope your husband's meds begin to kick in and you find a peaceful moment without worry or distress. My daughter has no insurance now that she is over 29 years old and home from school in Europe. She has a job but is a job created by a grant and there are no benefits. So she needs to pay out of pocket. Her cough is getting better. It just takes time.


I truly appreciate you partaking in forums and conversations here on our site. It's very important to take away a lot of other's experiences and knowledge that can guide us toward better health. Thinking of you. Blessings this season and I hope to hear from you after the New Year. Warmly - Rebecca (comm moderator)

hello Rebecca awww bless you, your a lovely lady, no it’s not good actually I don’t know what is going wrong and it’s scary, the boils or spots whatever they are I can manage with now but the severity of the hip pain I never had it so bad I don’t remember having it two years, I took codeine and paracetamol and the pain just as bad I don’t know if I can take naproxen with that but nothing is helping.
Today I also have electric shocks behind my ears, I am finding it so hard to cope, Nick started his anti depressants on Monday he isn’t doing well but I know they take awhile to work I can’t talk to him either as he can’t cope with himself never mind me, each days rolls into one.
I have started to write things down, I did tell you that the consultant is ringing me on Friday afternoon sorry if I didn’t things I can’t remember.
Thank you so much for the link.
We both are struggling, I totally get where you are coming from I really do.
I really hope you get relief with those injections, the steroid injection did a week and that was it I have no understanding what happened.
Driving won’t help it’s a long way, it’s a shame you can’t someone to drive for you.


Has your daughter seen the doctor? Yes my daughter is feeling better thank you but she has the cough not getting better and worse at night.


Oh yes the IBs- c sounds a lot worse, I have a bloated belly well it’s been bloated for years but since the AS got worse.
Nick makes me healthy food lots of veg but I eat processed too I don’t have sugar in my tea or coffee but I like herbal tea it’s not fresh herbs but packet herbs but it’s ok I think.
We never have takeaway, I did when I was younger loads of it but now not at all, neither of us drink alcohol, I stoped when I met Nick and Nick doesn’t it makes him sick and it doesn’t bother me not drinking as I only use ld to drink wine when I was out.
I never smoked but Nick did but he stopped a few years ago and now addicted to his vapour it goes everywhere.
Nick has an addicted personality.


Thats terrible you can’t afford ten as your getting older, can your insurance help? I suppose that’s why at least the NHS even though it’s falling down is there for now and helps.


I know you are Rebecca and I really appreciate everything you and the community do you help so much and I always drop in and see what people are saying, I don’t comment much but I know your there, for you as well you know I am here to listen and if I can help I will do.
Sending you big big hugs across to you, and I wish I lived near by we could have a chatter and a walk would be lovely.
I don’t know if I sent you some photos of what I take as we haven’t been out for awhile but will send some.
Take care Rebecca
Jan x

Hi Jan - I was thinking of you this past weekend hoping you are doing okay. I imagine that when dealing with HS, AS, and other chronic illnesses you are feeling not too well and struggling through the days. I'm sorry to hear that the boils and hip pain are continuing. I certainly hope the nurse gets back to you sooner rather than later. This disease can wear on a person. I imagine you have tons of questions that are going unanswered. Have you begun a "diary" of symptoms and questions? That might help you remember them and discuss them during office visits. Here's a link if you want to learn more. https://medium.com/


I too feel rundown lately, every day is a struggle. The pain has increased, and I feel less inspired as the days wear on. I hope the injection helps me. Waiting a few more days to have it, then see if I get relief. I had trigger injections again in my neck yday, and it seems to be helping. I have to go 2-3 times weekly and it's 45 mins one way. So I feel like I'm on the road quite a bit. I don't have the energy for that. But I am doing it bc that is the treatment plan for my spondylolisthesis in the lower spine.


My daughter also has that lingering irritable cough, but with her asthma, she feels her chest is tight as well which is bothersome for her. She is managing to slowly get better. I hope your daughter turns the corner and starts to feel better.


I have had IBS-C since a child and was not treated until my AS flare was extremely debilitating in the past 5 years. It can be painful and irritating. I watch what I eat, but it acts up quite frequently now as I age. I eat what I can, and stay away from foods that irritate my gut. I'm on 3 meds for it. I don't imagine as I approach retirement age I'll be able to afford all these meds, but for now I use them to help.


Just to let you know - we are here for you in the community to help you get answers through our experiences and trials and tribulations with chronic illness. If you need info, we can guide you in the right direction. Keeping you in my thoughts. Sending warm hugs this season your way. Thoughtfully, Rebecca (community moderator)

hello Rebecca bless you, you do so well.
You’re very welcome.
I know that feeling.
I hope the injection really helps,and you can manage to wait.
It’s amazing you can see three doctors on the same day.
We have junior doctors strike again like last year, the government takes no notice and patients suffer, I had an appointment in January but cancelled till July because of this.
Do you have IBS without c I have IBS had it for years but not on anything for that but I do get stomach cramps and pain.


Nat’s still not well, got a Gp appointment and said she has no infection which is great but it’s her cough driving her mad,she is seeing us next week so hopefully doesn’t pass the cough on to me as everyone is coming on Boxing Day so be a crazy mad house here.


How is your daughter now? Hope she is feeling better.
Yes I agree with you our healthcare is all those things it’s so very sad to hear.


Oh yes I remember you saying about Lucy, that’s such good news I remember how much you was missing her so pleased you have adopted her, yes she will definitely support you.
I am so sorry you lost your support dog 🐶 dogs are so wonderful and help in so many ways.


I really hope those meds and how you are feeling will be a big help and feel less pain.


Yes I was improving I thought but I have those boils back on my head and hip pain, I don’t know if it’s the AS or chronic pain. I spoke to the nurse about the biology therapy but haven’t said yes or no as yet,my head is heavy with so many questions and I’m not sure what to do as yet.
The nurse assumed I was coming in to the hospital but I had asked for a telephone appointment but no one told her that I had rang so it didn’t help she sounded annoyed.


You take care, thinking of you and wish you well as you can be.
Take care Rebecca.
Big caring hugs to you from me.
Jan x

Hi Jan - I am pushing through. thaks so much for checking in on me. I can get lost sometimes, especially while in pain. The pain has increased quite a bit down my legs due to spondylolisthesis (slipped vertebra). I have an epidermal steroid injection planned a week from Friday. Hope I can last that long. Went to my 3 doctors appts yday. Mostly good news. My GI doctor has changed my treatment plan as I am having more bouts of IBS-C and uncontrolled pain in my gut. Also, my neurologist has upped my dose of daily medication to help with the continuous head pain/migraine episodes. Always striving for relief.


So sorry to hear your daughter is ill. It's that time of year when germs just spread like wildfire. I am trying to keep myself isolated enough to avoid any truly horrible infection this winter. But ... who knows? My daughter goes to work daily and she's already been sick. Thankfully I didn't get her URI/cold.
Your healthcare system seems broken, overwhelmed, and ineffective. I surely hope she gets in sooner rather than later.


Last bit of news - I went back and adopted our foster. Lucy is her name. Although difficult on the meds she was given for pain (amputation and spayed) she has now settled and her personality coming out - pretty calm but full of energy. I missed her so much even if it was only 4 days. And my heart is full again. She will support me and I will support her. (Lost my support animal (dog) last fall. It was devastating. I really miss him.)


Overall with the new medication regimens I'll be using I hope some of this pain and irritability ends. Just have to wait. Glad you are feeling much better as of late, and wish you luck on the televisit with your practitioner. Warmly - Rebecca (community moderator)

hello Rebecca
Just checking in to see how you're feeling?
Have you heard anything about your injections ?
Hope things are a little easy for you.
My daughter isn't well, I think she has a chest infection she went to Amsterdam for a couple of days with her friend and said the coughing started just before she went so could of got an infection from Jack as he had one.
She has been trying to get an appointment at the Gp but nothing available crazy system we have so trying tomorrow.
Me not great pain not as bad as before but still there.
I have rheumatologist phone call tomorrow morning it was to go there but was changed to a phone call i will let you know.
Sending lots of caring hugs across to you .
Take care.
Look after yourself
Thinking of you
Jan

hello Rebecca, yes Brain fog, is really bad, i never used to forget as much as i do now, plus nick he can't remember anything either, his brain is stuck in the seventies when he was a teenager everything is way to fast for him and can't keep up, we are 64 but my head did used to remember things.
yes i hope so, i had a talk with the consultant and he said i have AS and chronic pain so not a great combination, he said it's how to deal with both, he is going to start me on Adalimumab, that was the one that i said no to in 2021 so they gave me the Inflixmab i think i told you, i know these drugs have horrible side affects and i know you can't not have a drug without side effects but that was one of the worst i remember reading about it so refused it.
this time new hospital and i said to myself i will go with whatever he says so i said fine but on the way home i said to nick i was worried but nick doesn't really understand i think properly he finds it hard to cope with his mental health and depression and social anxiety.
i will do thank you and you as well if you can.
what meds are you on if you don't mind me asking?
you don't have to tell me.


awwww you have such a kind heart Rebecca, you really do,how are your three other dogs with lucy
awwww,lucy is free at last i can imagine how excited she was to see you.


yikes that is so painful you must be in agony,what is a SI belt and back brace? is it like a corset?
that's good your insurance paid for it.
we do have private healthcare here but they don't cover old conditions and neither of us are working now so couldn't have it but that god we have the NHS yes it's not falling apart thanks to the lack of funding from the government but it's still here thank goodness and does take a battering and long time for things to get sorted but it's free.
i really hope those injections help you and please take it easy as you can with your beautiful pup.
let me know how you get on hugs.


yes been a parent has definitely changed whatever i say it's not right and friends know better arghh even though some of them have no children but jack and ella rule the roost with my daughter and what they want to do and where to go, my daughter her husband though is very strict, way to strict but i can't say anything.
jack is eight and ella is six.


yes nick is struggling and his family don't understand and he can't talk to them or his grown up kids.
very hard times understand but i am trying now to take each at a time but all nick sees the a a big empty hole and it impacts on me.


i think this year your daughter and your husband could cook the christmas dinner it's a lot to do for five but i can't cook hardly but my daughter is a great cook i have no idea where she gets it from but definitely not me.
lol take out christmas dinner.
i hope you have help.


i am glad your resting as much as you can with lucy.
it's good to have time for yourself.
i can't believe it's two weeks till christmas,time goes so quickly, i haven't put our christmas tree up yet as i like doing it but we have a small living room and a 6ft tree, i should of got a smaller one, will try when i have the energy to put it up, nick said he would but i always do it so i hope to this year.


jack finishes his antibiotics tomorrow he is happy aa doesn't like the taste much and feels so much better.


i really hope 2024 for you is wonderful year and your family and you get to do the things you like and lucy will keep you happy and healthy.
i think the reflect, rest and heel i hope to do that and i hope you can as well.


Thank you i will be in touch soon, keep well and safe.🙏
Take care, sending good thoughts, caring hugs across the sea.
look after yourself dear friend.

Jan

Thanks for responding. I know you are having a really hard time with fatigue and brain fog. I hope once you get your meds situated that this calms. This disease definitely does that. I was a wreck before beginning any treatment - couldn't get a sentence out that resembled anything correct. Take it easy and rest this season.


So .... we followed our little pup on the Humane Society site and saw she was finally spayed and put up for adoption. We all have been missing her chaos since taking her back. We talked about it and ... We adopted her! I went last night to pick her up - an hour's drive and an hour home. She was so so happy to see me when she came out from the back pens. I love her so much. And very glad to break out of "puppy jail". She ran out as if saying "I'm FREE!" Yay! She slept well last night as she was exhausted from being at the shelter. My heart is full again. 😀 #fosterfail.


I finally called a closer pain clinic associated with my last treating physician for help with my lower back. Went 2 days ago and had a consult and imaging done. The next day went in for a diagnosis and treatment plan. I have a slipped vertebra (spondylolisthesis) in the lower back that is hitting the nerves down both legs. Figures. I got an SI belt to wear as well as a back brace (paid for by my insurance thankfully). I also had trigger point injections in my neck to help with my migraines. They want me there 3 times a week, but being 40 minutes away I will try that schedule, but more like once or twice a week. They are sending me to the surgical team for epidural injections into my lumbar spine at the point of slippage scheduled in a week or two. It is so painful.


Oh boy. I understand how parenting was so very different from back in the "day". LOL I am not so young. And, my parents were fairly strict. It's great that he gets back to normal but remains well while building his stamina to work out with the team. I'm sorry your husband is still having a very hard time. I understand how you can feel overwhelmed - with everything you both are going through. I pray you get answers, and begin to heal. And hope your next year is prosperous and well.


I did have a conversation with my husband and daughter (27 years old) and she thinks that I say I do not want to cook Christmas dinner every year (maybe because I feel so overwhelmed with holidays), but that I usually end up making the holiday dinner for the 5 of us. My husband was all for foregoing making dinner - as he is definitely not a cook. He can carve a turkey, but ... mmmm well he's not savvy in the kitchen. He'd rather order out. LOL! So not sure what will be happening here at Christmas. And, I am okay with that. I will get help if I decide to cook.


I am taking time for myself, and keeping low-key in the way of the activity department. I have been resting each afternoon for a few hours with Lucy (pup) and she is a great partner to nap with. Along with the pain clinic I hope to be feeling better in 2024. Slow and steady ... Sending warm wishes this holiday and hope that you can find time to slow down, reflect, rest and heal. Happy happy Holidays friend! Please do keep in touch when you can - no worries. And I will check in with you as well. Stay safe and warm this December. Thoughtfully - Rebecca (comm modr)

hello Rebecca it was so bad not had it that bad before, the reason I had the MRI was because he wasn’t sure if it was AS due to my age and the symptoms I am having he needed to have the MRI himself to see as the one I had at the other hospital was an open MRI but this afternoon I received a letter saying it is definitely, so yes they take eight weeks why because the state of our NHS but he must of pushed to get it looked at quickly as only had it on Thursday and this Friday he needs to talk to me about the medications which I know but I did say in October whatever he thinks I will go with so that’s what Friday appointment is, I think cos he wasn’t sure I had doubts in my mind too but I know now.


Yes pain meds is the same codeine but depends on how long the steroid lasts I hope and pray it lasts awhile even though the pain is still there but not now as bad as before when I wrote thank goodness see how it goes, I can walk better today and not bent over.


Bless you I don’t want like more MRI like you had bit hugs 🤗 🤗 yes I hope so too it seems wheelchairs get taken up very quickly.


Oh no 😢 bless her, yes should have definitely kept her in longer must of been horrific for her and you too, you have three dogs awww cute 🥰 l am so glad it heeled up quickly. Hopefully the adoption will be someone like you loving and caring.


Yikes that’s all you need, hopefully you haven’t but you really need to get checked out when you can.



I bet you miss her but let’s hope she has a good home to go to.


Thank goodness my grandson is out of hospital and it’s very rare he gets poorly as heb a is outside a lot playing football in a team, but wears football shorts most days and the weather has been 6- below and so many ch snow but still wears shorts u don’t understand but when my daughter was little parenting was different to how it is today and my daughter is 36 has her and her husband’s ways totally different so I can’t say anything and Jack went back to school today but i thought he should have a week off but no back at school.


My husband went to see the Gp and the Gp doesn’t know why he is getting pains in his legs but arranging blood tests when that will be we don’t know, if bloods come back ok he will ask for a second opinion the GP will.
Everything is overwhelming right now and I keep forgetting things I think it’s brain fog as not had it before and so tired.


Yes I hope they will be the holiday activities, my daughter and grandchildren not coming till Boxing Day as we went there last year on Christmas Day so they are going to her husband’s parents who live across the road.


I think you definitely need to try and slow down as you have been pushing yourself.
My husband makes our Christmas dinner and he makes all our meals which helps a lot.
Maybe your husband could make Christmas dinner this time?
I really hope you get some rest Rebecca and some me time as you really need it.


Thank you and have a wonderful Christmas too and yes sorry I should of been in touch earlier, my mental health has gone down a lot and doing anything even sending a message is difficult and it’s not like me at all.
I will let you know about Friday.
Let me know how your back goes.
Lovely for Doreen to message me I really appreciate it.
Send big warm hugs across to you and your family.

Take care
Jan x

Hi - thanks so much for jumping in and leaving a warm message for . I hope you both have a fairly healthy and safe holiday season. Warmly - Rebecca (comm moderator)

Oh Jan you are going through so much. That sounds like a horrible experience heading into and having an MRI. I understand how painful it is to lie on that flat bed in the same position not moving for an hour and not being able to get up as I've had many MRIs. I certainly hope that you are given some pain meds. I don't understand why it takes 8 weeks for results. In the US we usually get results in a week. That sounds fishy. I hope that next time you head out to get a test or do an activity there is a wheelchair available to keep you from overdoing things and making pain so much worse.


We've had quite an experience with the pup. At 11 months she had to have her back right leg amputated bc her pelvis was not healing. She had it done and was back home within 5-6 hours. They should have kept her at the animal hospital for at least a day bc she was in so much pain and was bleeding every time she moved. It was traumatic for us here watching that little body go through that. She stayed with us another week, healed up fairly quickly, and they are now putting her up for adoption. I so wish we could keep her. Unfortunately, having 3 dogs is ruff! And, she has so much puppy energy and is very strong that walking her pulls my back out. She hasn't been leash-trained yet and yanks me while walking. So ... now I'm dealing with lower back pain. Thinking I pushed a disc out. Hard to walk with pain in the pelvis and down both legs. I truly miss her though and wish she were still with us. May need to see pain doctors sooner than I thought.


I am sorry to hear that your grandson and husband's health have been bad lately. It is a scary time for everyone with RSV and Covid and chronic health conditions getting worse .... etc - it sounds very overwhelming for you. I understand why your days seem to melt together and your thoughts scattered and why you have very little energy for the holidays. I hope you get the chance to keep holiday activities low-key and that you get the rest and relief you need. I am certainly going to slow down as I am exhausted from fostering and the pain and fatigue from this disease. I may even cancel preparing Christmas dinner. Maybe ...


Thanks for the big hugs. I have been wondering how you are fairing. Sending hugs right back your way. Please do look after your physical and mental health over the next few months. Please keep in touch. Happy holidays and Happy New Year. Warmly - Rebecca (community moderator)

hello Doreen how are you? Yes it was a nightmare.
I am resting I feel like I have been doing this for well over a month and still not getting any better.
Thank you so very much.
I will do
Take care
Big hugs
Jan

Hi @Jan 58,

I realize you directed this message to Rebecca however, I just wanted to jump in here and thank you for the update.
I'm sorry to hear how painful the (MRI) experience was for you. Just getting to the location sounds unbearable.
I hope you are taking it easy and resting today. May the days ahead provide some relief and the MRI results provide some needed answers.
We'll be keeping you in our thoughts, please continue to keep us updated.

Kindly, Doreen (Team Member)

Hello Rebecca
Sorry it’s been ages since I last messaged you
How are you doing?
How is your Pup?
Dis you have a lovely thanksgiving?
The hot showers do for a while then the pain comes back, the tension machine yes a little but I can’t use it through the night.
I can’t sleep either I feel like a zombie.
The skin infection keeps coming and going on top.
The IBS flares as everything is flaring.

I had the MRI on Thursday evening that was a nightmare it was a last minute cancellation in the evening at a hospital we didn't know and we both got lost and stressed, it was right at the end of the hospital and neither of us thought about getting me a wheelchair and I nearly passed out walking with the stick I have,no one was around to ask, I was crying and after going up to lifts, and three corridor's we saw a wheelchair and nick got me in for the last few minutes to get to the department.
Getting me on this very hard board for the MRI was a struggle and it was an hour, eventually she said I could get up, I couldn't get up | was screaming as my back had gone into a spasm and only way to get me up was to drag me up and the lady said it was going to be very painful so she dragged me off and I dug my nails in her hand I couldn't help it bless her she was lovely about it but I felt so bad.
I don't know how long I was there but eventually the spasm went and nick got me into the wheelchair to the car and got me in I can't remember it all apart from severe pain.
The next day I had a steroid shot I thought it was going to help but so far it hasn't I don't know why as has before we had a wheelchair for that appointment and the hospital we know thank god. It takes eight weeks to get results of the MRI. I have no idea about Christmas I can't think properly and my memory is terrible, every day just rolls into one and haven't been anywhere outside for weeks.

Jack grandson was in hospital last week with a chest infection he is eight and was antibiotics in his arm, he is home now and doctors said he can go to school tomorrow but i thought he should be off longer but they said no it's fine to go back just keep an eye on him. Nick my husband not well either.
Just everything.
I hope you’re doing well and sorry for taking ages.
I don’t know what next step is just painkillers
Sending big hugs across to you.
Look after yourself
Take care
Jan

It sounds like an awful extended and painful flare you're having. I hope that you can get it somewhat reigned in by Thanksgiving and you can enjoy a few hours celebrating the holiday. So glad the TENS unit is helping you out. Anything that works is a plus! Have you had success with the HOT showers, ice and heat, as well as walking about when able? Now it's your stomach - how exhausting for you. I have IBS/IBD and I understand the complications it presents, especially related to SpA. I hope that you can get some fluids down and soups or maybe bland food to ease the stomach pain and irritability. I certainly do wish that the MRI is done sooner than later and you get more answers. It's such a tough waiting game. I wish you the best this week and hope you get to celebrate with family and/or food and friends this holiday. Happy Thanksgiving friend! Warmly - Rebecca (community moderator)

hello Rebecca so sorry I haven’t been in touch, I ended up in hospital on Tuesday, the pain and spasms were off the scale and I couldn’t get an appointment at the Gp for two weeks, I rang 111 it’s the line before you ring for ambulance and I explained about the severe pain and spasms and how it’s gradually got worse over the last few weeks.
She said to go to the hospital and get checked as could have a bruised rib causing this, I got checked out and the doctor said it’s a severe flare and gave me strong meds, said hot showers,heat and ice, walk around when I can and rest,it will go eventually so that’s where I am at the moment.
The appointment at dermatologist I have been diagnosed with HS.
Everything has been frustrating and not knowing which way to too turn.
Yes the biologics well the one I tried didn’t work and has given me that rash which I still have and now has even more but they are not itchy at the moment and don’t want more antibiotics right now as have enough to go on with.
Last week my stomach was very sore, food, medication seems to upset it a lot it’s really difficult.
I have been using the tens machine a lot it has helped, I have it on for eight to ten hours a day, but supposed to be only a couple of hours a day, so glad it has helped you a lot.
The heating pad I have used my stomach which does help, had gels as well.
Last Friday I spoke to the consultant and it was a good chat I thought, well he listened but said no steroids till I have the MRI scan I have to wait god knows how long to wait as I am on a cancellation waiting list but still could take time.
He said he needs me to have the MRI before he does anything.
So it’s a waiting game which is driving me mad and it’s crazy when you have to wait two weeks to see a gp.
How are you doing? How is your little pup?
Thank you Rebecca for your support Rebecca it means a lot.
Will let you know how things go.
Look after yourself
Take care
Sending big hugs.

Hello there! You've been on my mind and I hoped to hear from you in the community. Has the dermatologist visit led to the diagnosis that the current rash is Hidradenitis Suppurativa (HS)? I certainly hope you find a way to calm this flare, and you can get relief. You've been going through such a challenging time this past year with this severe flare-up of ankylosing spondylitis, compounded by the rash. Experiencing persistent pain and finding the right balance of medications can indeed be a complicated and frustrating process. And, it's unfortunate to hear that the current pain management approach doesn't seem to be providing relief. I too understand the difficulty of dealing with stomach sensitivity to stronger medications. If I remember correctly, you are unable to use biologics to help, correct? As you know, a TENS unit sends electrical pulses through the skin to start your body's own painkillers. The electrical pulses can release endorphins and other substances to stop pain signals in the brain and the TENS can reduce pain. Has this helped even a little bit? How is the heating pad working out? I know it helps my lower back pain quite a bit.


I'm curious to know how the phone call with the new rheumy turned out. Sending you - thoughtfully, Rebecca (community moderator)