At my wits end.

Absynthe

Hi every one,

Firstly I'd like to apologise for the rant that will ensue below. I'm beside myself and dont know where to turn or what to do next.

I'm coming up 26 at the end of the month, I was diagnosed with PsA a yr and a half ago after 3yrs of grueling diagnostics.

I was first referrend to Rheumatology at 22 when I just couldnt say warm, I already knew I had Raynauds as it runs in the family, my mum and my sister also have it. From there things got dramatically worse. I developed psoriasis and joint pain, fatigue, chronic migraines, severe Chronic alternating IBS, my teeth begain to rot and break, insomnia, chronic back pain, regular bouts of ear infections and sinus infections. etc.

I lost my job which I had fought to keep thoughout all this with nothing more than a "thanks" I had been working for a local authority for almost 3yrs as an temp Admin clark. I loved my job.

Now I really dont know what to do.

Every thing is a constant fight. if its not the hospital who are more than ridgid with their advice and support, its the Job Center and DWP that want to drive me further into the ground it seems with these ridiculous forms and regulations. (at present I am fighting to get another medical assessment as I missed the last one) By who also seem to thing its fine to question the fittness for work of some one who serveral specialist have said isnt fit for work.) My claim has been cancelled an is currently being reconsidered.

Not only it there that to deal with the but unwittingly critical opinions of friends and family who seem to thing it k to jump on my case about working and what I wasnt to do wih my life. I know what I want to do with my life! I wasnt o be an art teacher but at the moment its a pipe dream.

I'm on methotrexate and have been for a yr now, current dose is 15mg weekly. I'm also on tramadol and Sopladol for the pain, as far as treatment goes thats all the hospital are doing. there has been no improvement. i was in the same position on the hydroxychloroquine and steriod injections.

Last xmas they discovered after months of me complaining about back severe back pain and an hr long MRI that I have DDD and compression of the spine along with fibromyalgia and carpal tunnel.

My joints scream and back scream at me daily with little relief. I struggle to do simple things such as making a hot drink and preparing and cooking a meal. my diet has suffered greatly in the last yr as my dexterity has become worse.

I'm so frustrated as before hand I was a fit and healthy, highly active, independant young woman who enjoyed life and work. Now I'm a frustrated jibbering, pain riddled mess that has no idea of what to do and I dont seem to get any understanding form anyone I speak to. I dont want to life like this. the last 3yrs have been hell and the disease is getting worse. my hands and feet are now blistering and the skin is peeling away in sheets, I'm always tired and in alot of pain.

I just want to go back to work and resume my life. trouble is it just seems to keep slipping further from my grasp. I know all the stress is making my health worse but I just dont knw what to do.

Again I'm sorry about the rant. I'm just so sick of being stuck between a rock and hard place.

duvarayi

Hi Absynthe

Welcome to the forum and I'm so sorry you are suffering so badly from this horrible disease. The good people here will welcome you and make you feel at home. As for the ranting, everybody on here will tell you the same thing, come and do it anytime you want and you don't have to apologise for doing it.

I'm new to arthritis myself, almost a year and still suffering because I've not had it under controlyet. I also had hydroxychloroquine which didn't suit me so was told to stop and steroid injection with no benefit. I'll hopefully start methotrexate next month. I therefore haven't much advice to give you.

I understand how you're feeling and just asked the same question of my life before arthritis and the is another thread "you all seem to be in control, how do yo do it" which you may find good as well.

The people who know better about the life with arthritis will be answering as soon as they see your thread.

I would like to send you big cotton (((((hugs))))). You are in good understanding hands here.


Babs xxx

valval

hi sorry life is so tough at the moment it horrid when it not under control not sure why you missed your app. but they do tend to expect us to jump through hoops even though getting out of bed hard enough some days. there are lots of pamphlets at top of page (living with arthiritis) print some off and see if it helps those close to you understand.
it hard to work with this i know i only do 4 hours a day and that enough these days.
could you manage a course at collage/uni they will take your condition into account and it will give you something for when you have your life undercontrol again it, will happen i know it seems so far off at the moment. stress will make matters far worse so do your best to keep it at bay when ever posible. val

stickywicket

First of all, Absynthe, no apology is needed. You are in a very difficult situation and, believe me, we all understand your stress, anxiety and frustration.

I probably shouldn’t say this but I’m struggling to understand why it took 3 years to diagnose you if you already had Raynaulds Disease, psoriasis, joint pain and fatigue. I think I could have managed to diagnose PsA with that information.

So, you’re on 15mgs meth. You feel it’s not helping and that hydroxy and steroid jabs didn’t help either. In which case, you need to go back and ask for something else to add to the mix or an alternative. You are not on a huge dose of meth. I take 15 mgs as a kind of low maintenance dose along with hydroxy. I used to be on 22.5 meth and a double dose of hydroxy. Others take sulphasalazine with one or both, or even an anti-TNF. There is more stuff out there to help you. What do you mean when you say ‘the hospital who are more than ridgid with their advice and support’. How are they rigid? In what ways?

My form of arthritis is rheumatoid so I don’t have the nasty effects of psoriasis to contend with. I’m afraid I can’t help on that score or with the work-related issues as it’s so long since I was on the work scene. Are you trained as an art teacher? If not, would it be a possibility to train?

There are various things you can do to make daily life a little easier. Try looking through the ‘Simple Ideas….’ thread at the top of this page. Have you seen an Occupational Therapist with a view to adapting your home? Have you tried a Pain Clinic for coping with the pain.

You are quite right that stress makes everything worse – quite literally. If your rheumatologist is not on the ball, why not ask to be referred to another hospital? That kind of thing can make a big difference.

suzygirl

Hi, I just wanted to let you know that there is light at the end of the tunnel. Is your gp supportive? If so talk to them about your frustration and what you would like. Ask for a referral to a pain clinic which can help. would like. Ask for physio and Occupational health input. Both of which can help and offer suggestions that make your life easier.

Physio for example can give you hydrotherapy for your joints. Once on a good combination of meds most people live near normal lives. It is difficult though. You need to be honest with your rheumy about how it is affecting you so he can treat accordingly.

Listen to your body and rest when needed, pace yourself so you can achieve what is important for that day.

Take care

bubbadog

Hi Absynthe, Welcome to Arthritis care, you made a good decision to come here, you are with people who understand and know exactly what your going through. And don't worry about ranting! We all need a rant now and then!! If we can answer your questions we will or advise you what's best to do. You did the right thing coming here and hope you get answers and advise that will help you and put your mind at rest and in time hope you enjoy being part of AC.

earthspirit

oh me i am so sorry to keep reading all these stories of pain and struggle that only people with arthur can really understand.
there are lots of wonderful people on this forum who will give help and advice but all of give each other support.
not having a dx does not surprise me as i went a lifetime - i got a dx last year and had all the symptoms since childhood. im 52 lol

i cant really talk about the skin issues as i have RA and not PA and for me the disease is worse when i feel the weakening sickness of the disease as it messes with your brain. the pain you need to get under control, but as others will tell you, the pain very often is there every minute of every day.

i get bye on the combination of paracetamol dihydrocodeine and diclofenac. they work like this - para takes away the "nip" from your joints, diclofenac can be ultra effective in reducing swelling & the diclo dulls the signal of pain to your brain.

once you control the pain its hopefully a bit easier to start dealing with the paperwork stuff and making claims for benefits etc.

taking the meds specifically for arthritis is not the be all and end all of controlling the disease

you need some calm space to think and the written answers that will come along in helping you with your specific condition will hopefully be along soon. i know we have a very good lady with same and her name is dreamdaisy. she is funny & quirky and seems to say the right things lol

you are not alone - we are here too in our suffering and pain. trying to relax your muscles rather than tensing with the pain is a quick pain reduction method, so breathe out slowly and let that bit of evil pain ease from your body. it does help if only for a moment or two but lets you catch your breath and let you think

dreamdaisy

Hello Absynthe, it's lovely to meet you and I am glad you have found us. I too have PsA, it was originally classed as an 'inflammatory arthritis' but when my skin helpfully obliged with a bout of P on my soles and palms my new label was attached. Nothing changed on the meds front, however, the experimenting with combinations of this and that remained.

I am now on a regime of injected humira (an anti TNF treatment), injected meth, sulphasalazine, pain dullers and the occasional anti-inflammatory. I also take folic acid, BP tablets (the humira has raised by BP) and an anti-depressant, Citalopram. (Discovering that the joint damage caused by the PsA has led to OA in my knees and ankles really laid me low hence the Citalopram.)

On reading your story it struck me that you don't seem to be on much in the way of medication. You are a very poorly girl by the sounds of things and your consultant doesn't seem to be too helpful with the treatment he is offering. The meds are designed to slow the progress of the disease by inhibiting the activity of your immune system. They are not an answer as such but they can be a real help in reducing the worst of the symptoms. When are you next due to see him/her? And are you in touch with Dermatolgy? DD

frogmorton

Hi Absynthe

I was so sad reading your story. Seems like a lot of time has passed before anyone sussed out what was actually going on with you

The first thing i will say is that I am glad you found this forum. When I first found it I bawled for the first week reading other people's stories and how kind they were to me!

There are lots of folks on here who have PsA some of whom are on anti tnf and some who are on MTX and other DMARDs. I don't know where you live, but different trusts seem to have different criteria.

Someone else has suggested that you consider a change of consultant....a scary thought, but not necessarily as big a risk as you might think....if you get treated better and are given more options.This is of course your decision.

Family and friends can be unintentionally 'chirpy' about arthritis especially if you are young. They have their own issues and fears and worries for you, so sometimes they want things to be 'back to normal' . Others are just simply ignorant to the degree of pain and exhaustion these forms of arthritis cause us.

If you can i think you could encourage them along to appointmenst with you or to read some of the literature on here...maybe even redaing your post would tell them just how much YOU want it all to just go away as well - probably more than them

I don't know if you've noticed, but there is a helpline number at the top of this page. You can ring them (I have twice and both times they had to wait for me to stop crying :oops: ) it can help to have an understanding 'ear'.

In the meantime you have found us - we are here for you .

Love and hugs

Toni xx

dreamdaisy

I've had a further thought: google the Spoon Theory, that is a visual way of explaining the tiredness we all feel and there's another item - I cannot remember it's name but it's to do with learning to live with a gorilla in the house. It's witty and thought-provoking. DD

Absynthe

Thankyou all so much for you're kind responses.

the hopsital, well this time last yr the specialist I was seeing and had been right through my dx up and left with out warning and I had to see a different doctor, she wan neither helpful or understanding. I expressed all my worries and thoughts to her, especially about the fact that my teeth are slowly dissolving in my mouth and I got grunted indifferent responses and made to feel I was being rushed and wasting her time.

I'm due back at the clinic 28th Aug, which to me isnt soon enough but my GPs have already read the hospital the riot act over my current state and the fact I was discharged without notice.

I will be raising alot of issues on the 28th and stamping my ground. Ishould have at least seen or felt some kind of improvement by now if the medication was working, surely?

I have not been given any info, Ive had to order all of it online from various sources. No support groups, no physio, no OT, No pain clinic, no medication info, nothing, not a bean! and the Job center have been the same. I dont even have a disabilities advisor. As far as the job center as concerned I'm fit to work at present, also if I'm fit enough to do a college or uni course again, it will be seen that I am capable of working. Not to mention as much I would love to a course (as I feel my brain is starting to rot now) I do not have the means of funding it.

I have on idea what help and benefits are available to me or where I can find out about them. I was claiming ESA before the morons closed my claim. It also looks like I'm going to need to claim housing and council tax benefits soon as well as I'm pretty much homeless. More stresses I could do without.

the Friend who is allowing me to sleep on her sofa and has done for nearly 6months now, doesnt understand my position and is trying to force me back into work as well. I got home last night from a 1st meeting of my bfs family to find that she had been in one of the local town centres scoping for job vacancies for me to apply for, I was both devastated and furious with her and increadibly hurt that she was being that insensitive. I know shes only trying to help but I dont think she even thought about much more frustrated and down troden it would make me feel.

I will be making an appointment with my gp soon to discuss various other matters but I will be asking to be referred back to Dematology.

stickywicket

I’m sorry things are no better for you, Absynthe, than they were a week ago when you first posted. In fact, in some ways they are worse as your friend’s actions would indicate to me that she doesn’t want the situation of you sleeping on her sofa to continue indefinitely and is clearly taking measures herself to try to alter things.

Distressing as this will be for you, it can’t be in your own best interests to be sleeping on a sofa bed when you have PsA, spinal problems and carpal tunnel syndrome. Have you thought of contacting CAB, or just our own Helplines here, for some good advice on both the work and benefits front with a view to getting a place of your own?

I agree that, if the meds were working well, you would have felt the benefit by now. As I said previously, you are not on a high dose of meth, and other things could be added to the mixture. I suggest you raise this when you see your rheumatologist in August. (I’m still wondering in what way(s) your hospital is ‘rigid with their advice and support’.)

Some of us made suggestions earlier which could also help you a lot – Pain Clinic, change of consultant, an Occupational Therapist (You can self refer), asking for physio, sending for some of AC’s booklets, contacting our Helplines, actively practicing relaxation techniques, taking family/friends to an appointment, googling The Spoon Theory to help them understand.

Your GP sounds helpful and that is good. I think a good next move for you would be to ring our Helplines. I’m sure they will be able to help you.

LignumVitae

Hey Absynthe - sounds like you are having a really rough time so here is a huge hug from me. I hope things pick up but having read through this thread I couldn't agree with Sticky and others more- I think you could really do with chatting to somebody who is informed, helpful and understanding. The helpline might just be able to give you the help and direction you need.

A lot of people without arthritis struggle to understand the problems we face, it isn't their fault, it is just that it is such a multi-faceted and strange beast so people tend to try and see it in a simple way and miss out lots of the issues you and the rest of us cope with. Don't take things like your mate looking for jobs for you personally, they are just throughtless in their focus but not necessarily out of spite.

Please call the helpline, I really think you need an understanding and supportive ear and some advice which might help you into a more positive place. Sometimes it is the small things that make a difference and when I contacted the helpline team they were so lovely and understanding I bawled my eyes in relief that finally I found a voice of reason and calm, it makes a massive difference. Lots of luck LVxx