Posted , 3 users are following.
Ok. Where do I start? I have psoriatic arthritis, because of this I have had, Uveitis, psoriasis, pain in every owned joint, and gland issues. I am currently on methotrexate and enbrel. I have had failed back surgery, now my SI joint is painfully bad, and my get up and go has never come back. Don't want to be depressed, but this leads me to not being a happy person, what can I do?
0 likes, 14 replies
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Okapis sheila74553
Posted
Ouch! How long have you been on methotrexate and enbrel? Enbrel started failing for me after 9/10 years. I'm now on Cimzia and find that its giving me better relief than enbrel ever did. So depending how long you've been on these meds you could ask to try another biologic that will be beat the SI inflammation back. If the disease is advancing then its time to change meds or docs by asking for a second consultants opinion (NHS UK) in a big teaching hospital if possible.
What pain relief are you using? A prescribed NSAID plus pain killer I hope?
Thinking of you!
sheila74553 Okapis
Posted
sheila74553
Posted
Okapis sheila74553
Posted
Yes Comzia's another injection but once a fortnight, which helps. Have a look at the Arthritis Research UK at all the different biologics that are available these days - they're lots!
I'm a bit staggered that youre not taking either an NSAID or a painkiller other than paracetamol! An anti- inflammatory - not the bog standard otc one - would be normal for PsA and a pain killer if you needed it, especially if you are working full time.
Pain pacing is something you could usefully learn about if the GP/Rheumotologist are prepared to refer you to a pain therapist. I found it very useful for my working life. When I also began to suffer badly from Atrial Fibrilation and had reached 60 I decided to drop a day and became part-time at 4 days a week. Helped a lot as it gave me a chance to recover..
How about having a discussion with your GP about your meds? Do you have a good enough relationship? Your GPs backing with the rheumotologist will help and if necessary for a referral for a second conbsultant in another hospital
Lisa_Batts sheila74553
Posted
Oh Sheila I so feel for you. I'm having the same trouble at the moment. I have peripheral neuropathies, PRA, Methotrexate and yet I still kept going determined not to take pain killers and live my life the best I can.
Long story short in the meanwhile I had a trauma to my foot. 8 cancelled orthopaedic appointments and when I finally got one the specialist was rude,arrogant had me in tears and 3 appointments later, taking my friend who is a nurse ( he wouldn't let me speak) she finally got him to admit he had neglected to start treatment in time leaving me with a deformed, constantly in pain foot which in turn due to overcompensating has crumbled a disc in my spine with another bulging into the nerves in my spine... Which will degenerate. How do you find happiness in life with all that? Not to mention he 'forgot ' to refer me to pain management and physio which I've still not started 9 months later and now also have the pleasure of 2 bottles of morphine a week not to mention my back locks every night...... I said short...oops! Anyway you get the picture.
So how do you find happiness and motivation?
The best answer I got was from my Dad about an hour ago!
Stop putting so much pressure on yourself and trying to find motivation to do things which really aren't that important. Remember every day you get out of bed is an achievement and with me when I get physio and pain management things will be easier. Accept that you are chronically ill and that things are at their worst right now. Learn to do what your body is telling you, ie sleep etc and there WILL come a day when your motivation will start to come back and doing simple things will bring happiness.
Sorry for the long ramble but I'm right where you are and I so want to help you. Remember it won't always be like this.... It will pass but while it is stop putting pressure on yourself to do things.
Bless you and sending lots of love
Lisa
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Okapis Lisa_Batts
Posted
So yes Sheila, treat yourself gently. Dont push yourself into doing too much..achieve small things.
I found a pain therapist invaluable. She taught me about pain pacing. I found it a bit bizarre to begin with putting what she suggested into practice. But it WORKED! I practice pain pacing to this day in all I do even though the worst of the pain has gone. Just makes life easier.
Thinking of you both!
sheila74553 Lisa_Batts
Posted
Lisa, I am so sorry for you as well. I am glad I found this website as I needed to reach out and ask questions. I am always going through something, and it never ends. Thank you for responding. I am still working full time and being a Grandparent and very busy, I have a hard time with activities and working anymore. It's so hard!
Lisa_Batts Okapis
Posted
Bless you and your skewer!! I have yet again been on the phone chasing pain management because I know the benefits it can bring along with physio. I have had no physio yet and as for pain management a referral was supposed to be put in around June and the 'skewered specialist' forgot. A referral was eventually put in on 8th August with a chase up from my doctor.
What is keeping me going is that pain management along with physio will help me to move forward. It took me a long time to accept the problems 'the neglect' has left me with and pain management and physio were what I was clinging to for hope once I'd accepted it.
Yet nothing.
No help at all.
I feel the NHS has robbed me of my life, my personality and all emotions.
I'm just numb.
All those months of every time I put my foot on the floor and overnight my back locking (and in the day) I've seriously had enough. An animal would not be left like this.
Passing to my dad to go through complaints again because I haven't the heart.
Thank you for taking the time to write this. It really does help when people understand with an empathy they can actually relate to 😊😊😊
Thank you
Lisa
Lisa_Batts sheila74553
Posted
Dear Sheila
You are so down on yourself and I found myself gasping reading all you do..... You are amazing 😊😊
However I think with this dreadful illness that may be part of your problem. You are juggling so many balls no wonder you don't know which way is up.
Maybe it's time to prioritise. My pride was stripped from me when I was actually told I am unfit for work. I've worked all my life, I even defied the doctors for 18 months by doing voluntary work but that got too much as things progressed. Working full time must be killing you. I know everybody's situations are different, financially, family wise etc but with what you are going through have you thought of talking with your doctor and getting signed off from work. This would free you up to enjoy the things like your grandchildren etc instead of it becoming another 'chore' because you are so worn out. You have to water yourself first, ie, look after yourself to be able to give your best to the things which are important.
I'm not sure of all the rules (citizens advice would help) but if you get yourself signed off I believe after a certain amount of time or depending on what your doctor signs you off with you can claim PIP money which is especially designed for those who have chronic illnesses and are unable to work and therefore is higher than the usual sick pay.
It's difficult. You have to make choices. You have to let some things go. Life is short. You need to learn how best you cope with this illness and treatment and take time out to sit with yourself, accept it and make sure that you are in a good place so you can be the best you can to the people that matter.
As said above Okapi (?sorry it won't let me go back to check spelling of name) be good to yourself. Be gentle. Do things you enjoy, simple things (adult colouring books are great!) and take it day by day.
You don't have to have it together every minute of every day.
You are in my thoughts and I am rooting for you to find the best way to cope
Lisa
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Okapis Lisa_Batts
Posted
You really have not had good treatment. In the current state of the NHS it does pay to complain gently using the right channels ie PALS... If the doc has cancelled appointments/ clinics the hospital needs to know. I once had an Liver specialist appointment cancelled 4 times when my rheumatologist badly needed an answer on something.I kept on going to the back of the queue. It turns out that no one "knew" in the hospital - the list just kept getting longer
I wrote an email to PALS (Patient Advice and Liason Service) not expecting much. I had a phone call in 2 days - checking some facts and then a phone call from the clinic offering a new and very close appointment. When I reached the consultant (he worked in another hospital) he was not a happy bunny. He had been made to offer three extra clinics to make up for the ones he dropped. Made some comment that his rota at St Mary's did not always allow him to do the clinic...Pleased I managed to keep my mouth shut on that one!
Please discuss getting a second opinion from another consultant with your GP. It sounds as if you need it! A referral to a large teaching hospital with a big rheumatology department is possible...
I think one of the hardest things about the illness was accepting you could not do what you did before...that your life style/ work would have to change. Is your work such that you could drop a day or change what you do. I found my employers occupational health department sympathetic and helpful. Is your employer big enough to have one?
Time for something to change....to lessen the burden on yourself, you cant go on feeling so ****!
sheila74553 Lisa_Batts
Posted
Lisa, thank you for taking the time to talk to me. You actually brought tears to my eyes. Yes I am in need of prioritizing, I have worked my entire life, it's so hard to leave what you know and love. My doctors are wanting me to quit for my sake, they want me on pain pills but I can't do that and work. I do see a pain specialist in Oct. I just never realized how bad this disease is. Your voice spoke to me in your writing, and I so appreciate what you have said.
Lisa_Batts sheila74553
Posted
Dear Sheila
Oh bless your heart. I am so happy if I was able to help just a little. I'm sorry for the delay replying. MTX day Sat plus the morphine makes screenwork difficult.
When the doctors diagnose you then send you out in the world with your prescription of MTX I know myself I was still reeling from the diagnosis with no thought for the medication and of course then come all the questions you want to ask and you don't get to see your Rheumy for months and it's bloody scary. There is no aftercare, no explanation re the MTX and the impact it will have on our lives so we ourselves don't know how serious it is.
I hope I have given you some relief rather than scared you that this is a chronic disease and the treatment takes it out of you.
I think from what you replied that you found relief 😊 There should be some aftercare. The first stage to sorting your life out is accepting this then you can start working with what you can and can't do. I know it's hard but in time it gets easier. It's still life, you will still have good times ahead of you if you make sure you are 'watering yourself'. I know I was horrified when I was told I would never work again. Now I realise that is the way it has to be. I need more rest, I sleep at odd times, I have bad days where just getting dressed exhausts me and I have good days where I enjoy sketching, adult colouring books, having a friend round and watching all the Nordic programmes. If I worked ..... Well I couldn't let's put it that way!! The above fills my day everyday.
There is no stigma in giving up work with a chronic illness. I say I'm medically retired. I'm glad you are thinking about prioritising and my opinion (just an opinion) is to get signed off from work for say 6 months (you can choose to never be signed back on) and in that 6 months I think you will realise that work isn't that important. Managing this disease is important. Imagine having the energy to enjoy your grandchild instead of being exhausted from work. Work will not help you with this. Family and friends will. It takes time but should you decide not to work and get signed off as chronically ill, as a genuine disability case the PIP money will see you through. They do look after the genuinely disabled financially..... Sorry PIP is what was called disability living allowance.
Use this forum
I also never took painkillers until my foot trauma. Hot baths and ice packs worked well enough for my pain to be bearable but again there is no shame in taking painkillers.
I'm sorry if this is a bit rambly but I'm very tired today, I've had visitors all morning 😃😃😃😃 and I wanted to get back to you as soon as I could after your lovely message.
Keep going
You are not alone
Sending a big hug
I will always reply if there is anything I can help with but it may take me a few days.
Oh and the beauty of a chronic illness is you are not only allowed to sleep in the daytime..... It is expected of you!!!!!! Just trying to make you smile 😆
On which note my bed awaits for the next hour or two
You are in my thoughts
Sending you some sunshiny vibes
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Lisa
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Lisa_Batts Okapis
Posted
Sorry for the delay,
Having a nice little flare up!
Not sure if that last message was to Shiela or myself but thank you for your advice. I'm sure it helped both of us. My Dad actually knows Tom at PALS personally now!! Getting in touch with the secretary of the hospitals director got me an appointment!!! PALS are also aware of my situation. Dad deals with all that because he started the ball rolling there he was so angry at my treatment.
I've had a second opinion and she said she could only work with what she's got. She would not commit either way as to whether my foot could have been pinned or not. Typical can't get an appointment for love or money and I now have another appointment for a second opinion!!! I'm going to keep it... You never know!!
I've had some good news. The physio and pain management that should have been instigated months ago and wasn't I lost my rag last week and had my first home physio Tuesday and an appointment for pain management at the end of the month.
Myself I'm 'medically retired'. When I was told I wouldn't be able to work I was distraught and even tried voluntary work but as things got worse I had to let it go.
I thought I would be bored at home but doing simple things, plus the fatigue I often don't find the time (or have the energy) to get round to my hobbies!
Talking of being good to yourself I'm off to take a morphine, eat a chocolate bar (my weight has started dropping quickly again) and am off for a doze to catch up from two nights of 5 hour sleeps. The pain now wakes me in the night.
Can't wait for pain management!!!!
Instead of feeling bitter about the awful treatment I have had and the neglect which has left me with more problems I am trying to be positive and look forward. What else can you do? Everyone shouts 'sue! Negligence' and I may follow that up one day but at the moment I don't have the energy
Bless you both
I hope you are both going through good periods in your illness and wish you well
Lisa
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Okapis Lisa_Batts
Posted
Oh good! I'm so glad that matters have started moving again and hope that the second opinion and/or the pain management helps you.
I've suddenly developed a flare after 5 months of Cimzia and rather think I'm going to have to contact the rheumatologist. Burning sensation in my hands too! Aaargh why is nothing straightforward...