What financial help is available!!!!!

Hi Robert

I have never seen one of those before. It would be brilliant if it does work. Shame you werent given it sooner. My fingers are getting more wonky. I might ask about that. Thank you. 

I will let you know how I get on, on friday

Thanks again x

Hi Robert.

Meeting went really well thank you. I didnt take any painkillers that morning! Thought it best to remember how it is on my worst days. ha ha. I was in agony and couldnt stand or sit for long and struggled to walk. I didnt realise how much the pain relief was helping as I felt awful. It was exactly like I feel on one of my bad days. The man who interviewed me was so lovely. He wasnt judgemental and looked like he cared. It was pretty much a repeat of the form that I filled in. Barmy really. He didnt really ask anything different and he doesnt even get to decide whether I am able to claim. Just got to wait now to see if I qualify. 

My job comes to an end this month. Im so sad to be leaving as it really was the best job I have ever had. Time to move on now though. I have an appt with the back specialist in a couple of weeks and am still waiting for my MRI scans on my back. I think my Sulfasazaline may be starting to do something. When I wake up, my hands are not stuck! I am still in pain with various joints, but at least I can move. Always good to try to find a positive and nice to be able to. 

How are you getting on?

Hi Lainey 

Pleased to hear that it went ok at the meeting, sad to hear that your job comes to an end but hopefully with the Sulfasalazine starting to work things might get better for you hopefully the scans wont be too long.  

The increase in Methatrexate seem to be making some difference im not in as much pain when i wake so looking good, I cancelled the injection in to my heals due to the pain when i had the last injection in my finger I decided not to go ahead with it. 

speak soon x

 

Hello snowycat!

Thanks for your message. I love this forum!

Meeting went very well thank you. I am PSA four and half years and am 46. (Young inside head, but old in body)!! ha ha. Its brilliant that yu are managing to work still. Its good to have a focus. How do you deal with the fatigue? Sorry that you have tough days. I have them too and am not even holding down a job. I too, try to have a positive head. I didnt for a while though. Sounds like you have a wonderful husband. Dont know what I would do without mine. My children keep me going too. Its interresting to hear someone else say about back issues! Mine is awful too. I struggle to sit or stand for long periods and also have trouble walking. They are saying mine in AS, but they think I may have another underlying issue. What exactly is the work they want to do on your back? Also seem to mirror your other joint pains. Nightmare isnt it. Did yours come on quickly?

I live along the South coast. My local hospital is good, but they have a lack of rheumatologists and they are shared between two hospitals (hence the awful locums they employ)!

Lovely to hear from you x

Hi there, sorry for delay my hubby kept taking me on holiday lol.

It's late so just brief reply and catch up whenext more time.

The surgery us RFA radio frequency ablation where there go in and zap, bu

Lazered type the nerves in the joints. They grow back but slowly and hopefull6

Not in the area of disc bulge place.

I've decided to research and try learn more movem9, this not being able to

Stabd up for more than 20 secs these days is starting to get to me.

Hope you are having some less troublesome days.

Spk soon xx

Hi. I would definitely be interested in learning more about the surgery! I too, am struggling to sit, stand and walk! They have spoken about putting me on antiTNF therapy! Is this something they have suggested for you?

Hope you enjoyed your holiday!! Lucky you x

 

Omg my mast msg tupo hilarious...

I'm on humira not sure this time of night if that tnf. It's lovely we in contact albeit not fun stuff. My sacroillac joints are the issue, I see good rheumatoid team but pain consultant is current back man. I do wonder if its just psa or...

The hols was ok, bought a travel memory foam topper but still agony most days, mr has nice fishing that's my priority. Send me private msg if fancy more ladies chat.

Take care huni

Zzzz for now xx

Hi Daniel

I am so sorry that you have been left in such an awful situation. 

My first MRI only showed degenerative changes too. I dont think that it should be ruling out any diagnosis! Psoriatic arthritis causes back pain! Do you have pain in any other joints too? How long have you had back pain for and have they run any bloods? 

I am so disapointed for you, as in your profession, you would have thought that you would have been well looked after!

PIP seems to be a really tough one to get doesnt it. I am still waiting to hear! It is made worse, by so many people putting on complaints that they dont have. My neighbour is a retired doctor and he has told me about many patients that put it on (even when he has seen them dancing around)! Its a crazy system. 

Have you tried employment support allowance? You apply through the job centre plus. My employer put me onto it. It can be based on your NI contributions or income. There are also a couple of websites that you can go to for advice. If you type your circumstances in, it calculates any help you are entiltled to. 

https://www.moneyadviceservice.org.uk/en/articles/disability-and-sickness-benefits-check-your-entitlements

https://www.citizensadvice.org.uk/benefits/benefits-introduction/what-benefits-can-i-get/

Hope these can help you!

I completely understand how all of this is making you feel. It has taken me a long time to get my head around all of it (and get used to the idea of having a chronic illness)! Things will get better for you. This is such a lovely forum to use and some good advice can be found. Take care x

Sorry, I used links to some websites that give you advice! It will hopefully come up after it has been moderated! If not, I will send you a private message with the links x

Hi Robert

I HAVE GOT IT!!!!!!

Got my letter today. Am so relieved. They have also back dated the pay to when I first applied. 

I have had a lot of trouble with my hands and back. They have been so painful. I saw the back Physio today. She has put me forward to get more hydro and physio sessions. She is also chasing up my MRI. She is quite sute that I have inflammation in my spine. I just have to wait or the MRI to be done and then get the results. If it doesnt show any inflammation then they wont escalate me to the TNF therapy. I dont want to have inflammation in my spine, but at the same time, if it shows up, then I get the help that I desperately need. 

How are you doing?

Excellent news pleased you got it and back dated bonus  

My hands and feet have been painful recently well more than normal. 

Sounds like your phsyio is doing the right things for you hopefully you will get the treatment you really need. 

keep in touch 

Thank you. It seems to have taken a long time to get myself sorted. I feel like I am finally on the right road now. I am crossing fingers that the sulfazaline starts to kick in and makes a difference. I would love to get my back sorted, so that I can get back to walking again. I have really missed that. 

Sorry that your hands are still painful. Cross fingers they will improve. Take care x

Hi Lainey 

Hopefully the Sulfasalazine will do it for you. Had an appointment with the occupational health yesterday re my swan neck finger, after a month of wearing the splint no change. Not surprised as it should of been done 9 months ago when it started not 9 months after the damaged had been done, but they suggest i continue to wear it to stop any more damage. 

Did you get the daily living rate or mobility rate of PIP?

 

Hi Robert

The consultant said to me that they now try to treat the arthritis before any damage is done! Why on earth do we have to wait so long for treatment! Like you say, the damage is done before we get started! I am the same with my hands. I have been told I have osteoarthritis now (to add to the list)! I have started using an inflammation gel (voltarol), on my hands. It does help with the pain. 

I scored quite low with the PIP rate. I am daily living with a score of 4! Its good to have the money, but I am not eligible for a blue badge. I struggle so much with walking and sometimes walking back to my car seems impossible. I am not going to grumble though, as I didnt expect to even get any financial help. 

Would they consider operating on your finger? I dont know much about this, or even if they would consider it, or if it would help. 

x

Hi Lainey 

omg how bad is that 4 points they are taking the P*ss with your condition, I know they were changing the point system but i thought that had been dropped after the uproar, appears not to be the case. 

I the treatment is very slow and more damge is caused while waiting for the correct treatment. There has not been any talk of an op on my finger so watch this space they have realised that its too late to repair the damage with this splint but advise to keep using it to stop any more damage, and agreed to more wax treatment but yet again I have to wait for that. 

Best wishes 

Rob x

Hi Robert!!

I think I am going to sue the NHS!!!! Just when you think they are finally sorting things out, they go and do something else!

I have been waiting for my MRI to be done on my hands, feet and back since the beginning of May. The consultant said he needed to check for changes in my lower spine as I am having so much pain from it. I chased the MRI twice and asked my nurse to chase it. I had an appt to see the doctor who specialised in back problems. She said there were traces of inflammation on my last MRI (done in Dec). She said how immportant it was to get another MRI done. If it showed up inflammation, they would escalate my meds to antiTNF therapy, which should help. She asked me to chase the MRI up again. I phoned the next day and to my suprise, they had not been given a request for me. I rang my nurse and left her a message filling her in on this. She rang back later that day and told me that the consultant wrote the request for a MRI that morning (I saw him 8 weeks ago)! It is only for my hands and feet though as he feels I dont need one on my back at the present time!!!!!! I reminded her that I am struggling to walk, sit or stand due to the pain and that he originally said I needed it and so did the back doctor!! She said he had changed his mind! Arrrggghhh!!! Why??? I am so sorry. You are getting my full angry rant (my husband got it first)! This added onto all that I have been through already has tipped me over the edge! I have left a message with the back doctor, requesting a call back. I really dont know who I can trust within the hospital anymore!

As for the PIP, I was just releived to have some money to start with, but then discovered that it leaves me with no further help! I was hoping that I might getting a parking badge, as I have a nightmare when I go the shops! Another battle that I have to face.

I hope that you have had some news about treatment and that you are not in too much pain at the moment x

Hi Lainey 

unbeleiveable how much more do you need to go through, I am ot suprised you have decided to Sue the hospital, which I dod say to you to do sometime back, Maybe just maybe they might start to listen to you and actually start to treat you properly, I know it all adds to the stress and thats the last thing you need when your not feeling you great with all the pain you have to suffer. It is so wrong how people get treated unless people like you take them to task, im sure you have a good case against them.  Oly getting 4 points on the reformed PIP assesment stops you getting a blue badge so the new government system is stopping people who really need the help getting it. 

I dont blame you for being angry i know how you feel, just take it out on the hospital when you sue them. 

Im no better say thing every day, I am waiting for more heat wax treatment I have to call them tomorrow to get appointment no idea how long I will have to wait. 

Take care speak soon Rob x

 

I have blue badge got assessment last year. If only we were closee we could do coffee!

I think you can p.m. me on here x

Hello snowycat

That is so kind of you. At least we get to communicate through here. We can p.m. ass well. That would be lovely.  I sometimes feel like I am going backwards. I really want to fel better and have had enough of telling my children that I cant play or go out. I would love a holiday this year, but there is no way I could sit for long enough on a plane or walk around when I am there. Think I might look into going somewhere nearby with a pool, so at least I can join in the fun with my family. They backdated my PIP to when I first applied and I got £700. Think a small break will put it to good use,

Hope you are getting on OK x

Thank you Robert.

Sorry that you are no better. Shall cross fingers that you can get an appointment. 

I hate being negative, but sometimes I feel so low. I am sure I will pick myself up though. I am very determined to get through this. 

I have rung and left a message with my consultants secretary this morning and have also got hold of the secretary of the back doctor. As far as she is aware, I am still getting the MRI of my back! I will keep calling until they answer me and will email the complaints dept to let them know what is happening. I am then going to find a solicitor! 

Being pro-active is the way to go!

Thank you again. It makes such a difference to be able to come on here and off load to people that understand and care.

Elaine x