Pip text messages PMR

[Chrissielil]

Hi

I'm new I've been diagnosed approx 4 years now with PMR.

ITs been all down hill from there. I'm still on steroids and my Dr wants to get me off them. I get Symptoms but I've decided going back to her every 3 weeks I'm going to put up with the pain of it. I've also got brittle bones will osteoporosis and I have a very weak right leg and am using a stick. My Dr said to make Pip claim because I'm really unsteady, have regular falls breaking something and I've had enough. I live on a country lane with a very limited bus route and even when they do turn up I end up rolling around like a marble as the bus takes bends and hills at break neck speeds. My question is related to pip. I only claimed in the middle of April 2016 got a face to face within three weeks and I've had a text message stating I qualify for PIP and there will be a payment to my bank within 2 weeks. I know these things are individual but I really hope to be awarded enhanced rate mobility. The face to face health professional wouldn't do the physical as it was deemed as too risky for me. I can walk about 50 metres but not safely without someone else because I'm unsteady and I get dreadful hip pain. I'm very deficient in vitamin d because I don't go out on my own. I fractured my skull falling just outside the house into the garden.

[Rose54]

Hi

I hope you do get the enhanced rate PIP however PMR is not a medical condition that they tend to favour as they feel it can be successfully be treated by medication .

Many that have mobility problems walking with crutches and two sticks are being refused.

Time scales to request mandatory reconsideration are changing from 4 weeks to two and even then the original award can be changed or taken away completely .

Good luck

Rose

[Chrissielil in reply to Rose54]

Thank you I'm aware of THE PMR diagnosis being grainy my physiotherist said it's not a diagnosis but a cop out because I do have very high inflammation markers. Something is not adding up. I've been on steroids for more than 3 years. They are adding to the osteoporosis I have a very early surgical menopause because of tumours. I was 34.

The right leg weakness isn't due to the PMR and apart from periods of pain and stiffness and some days of extreme fatigue. PMR isn't an issue. The main problem is falling and breaking bones. There is some thing in my leg it is swollen and very painful. I can't balance without my stick or lift it and really need some help. I'm so sick of it all I just don't want to live anymore. I've broken 2 toes within 3 weeks.before that 4 ribs 3 front and I back, it was agony to even breath. It's not that I want to die and leave my children I'm just scared of living. I wouldn't have made a PIP claim myself the professionals have told me to. I'm aware that having a car will not eliminate balance issues but I could go out without being shaken to bits on the rural bus. I would also have another shot at life. Our little bus starts a bit too late Am and ends early pm. I'm quite limited to what can do and where I can go to work. I would love a job even a voluntary post would help me.

I've been a qualified health professional but had to give up because of falls and mental health issues.

I'm very grateful for your reply I'm scared to death to find out what rate I have qualified for.

Thanks once again and I'm pleased to hear from you. I won't get my hopes up.

[HeronNS in reply to Chrissielil]

I am so very sorry to hear of your troubles. Do you live alone? It's hard enough finding enough support sometimes when one is relatively hale and mobile. Hopefully your situation will improve quickly. I'll send you a (very gentle) virtual hug. 💕

Do please keep in touch with us. We care.

[Chrissielil in reply to HeronNS]

Thank you so much. I'm living with my daughter and my son.

My son has autism and needs me to be OK.

I'm just so nervous about the Pip. I know I've got something though so at least I have that. I don't know how people Cope with months of waiting. I didn't claim Pip so I don't really know that much.

Thank you again I can feel the warmth of your hug already x

[Rose54 in reply to Chrissielil]

Hi

I really hope you get a good award

life is so unfair at times, we need to take the meds which lead onto other side effects which then have ongoing effects on our health .

Fingers crossed you will get it and be able to use it to get around and have a better quality of life which should help improve things .

Please let us know how things go

you should get it backdated normally to the day you made the initial phone call .

Best Wishes

Rose

[Chrissielil]

Hi everyone.

Thank you for your good wishes. I'm pleased to say that I was awarded enhanced mobility component. It's going to make my life so much better.

A huge thank you to everyone for reading and replying. It's been a huge help throughout.

I would like to share my expertise with the forum because my new claim was relatively straight forward. I just need to know where to share it? I'm not particularity technical.

Best wishes to you and your loved ones (they suffer too well mine did).

Chrissie

[PMRpro Ambassador in reply to Chrissielil]

You could write a post and put it up as a new thread.

Or you could write it and send it to the charity - I'm not sure if they have "useful information" on the site. Certainly sending it to the NE support group site would almost certainly result in it being put on the site to be available. I could also post it in a section on the NE forum where it will be easy to find for other patients - I can easily do that by copying and pasting a post you write on here, which you are already used to doing. I'd credit it to you of course

Here is the link for the NE site - they have a "contact us" button on the right of the headline:

pmr-gca-northeast.org.uk.

[Ronswife]

I've had this a year and it's my second time. Do you think food allergies or sensitivity is a trigger.? Infections in teeth? What is your theory?

[PMRpro Ambassador in reply to Ronswife]

No-one knows. Various unknown things have an effect on the immune system - can be chemical, infection, environmental, stress and a load of other things - and eventually the immune system is overloaded and goes haywire. There are hundreds of autoimmune disorders - we happened to develop PMR. Which to be honest isn't as bad as many things it could have been: it isn't fatal it doesn't cause serious organ damage and for 75% of patients it goes into remission.

[Chrissielil]

Nobody knows what causes it so there's not much research if any. It has been linked to a flu type virus and I had a dreadful 3 week illness about 4 weeks later it hit me like a train. I also had a dreadful a dreadful abcess twice. Stress is also a trigger in with autoimmune. I also had radiation after my thyroid went insane.

With any autoimmune disease there could be relapse and remission episodes but I've yet to realise a remission. Good days and bad days yes.

I have never really suffered any allergies apart from coconut shampoo hates my scalp and plaster attacks my skin, the swine.

My job in the NHS was to diagnose, refer or make short and long term plans to enable people to walk. If the foot isn't functioning as it should there'll be problems with knees and hips and ultimately back issues. If the correct movement isn't there other joints will compensate and become damaged. There are limb threatening and serious infections to look out for too. Damaged nerves and gangrene are not any thing PMR sufferers will experience or need to worry too much about. However with that said being on steroids makes you not only compromised to but the clinical signs of infection are masked. I have seen people on steroids with dreadful infections they aren't aware of. I am aware they may be there so I might look a bit longer or search harder.

I didn't see this disease in my clinic and my medical training although specific was very in depth exactly the same first year as a GP would have.

There may well be a predisposed factor or number of factors as yet unknown.

When I was diagnosed I had my nose in my medical books so much it learned to turn the pages.

Now I've given them to charity shops I decided it was like studying the weather forecast when buckets of water are hitting the window. I decided it's totally individual.

I haven't had my fifties yet so I chose not to bother looking anymore.

I've had a crappy week so I've took the day off. It will be tomorrow soon and today will not matter.

I changed my life style and I did that from what I learned here on this forum.

I walk my little puglet when I can but when I can't I don't she hasn't complained. I didn't have a dog before so I got one and she's just the ticket I needed to see life wasn't over.

I've had this for 4 years now the meds made my bones weak they gave me vile drug proberbly invented by a monster. I'm on quite a few drugs now to counteract the other issues I had. My blood test this month came back high I kind of thought they would because I've been in pain. The doctor phoned me early on the morning following the test. I'm anaemic and that scares me. I'll be glad when in tests to find or why have been done.

Most of the advice I've taken and had helped me come from the forum. I feel that the only people who can understand are other sufferers.

I had so many drugs thrown at me I am aware of many of them but I wasn't told how to take them I found that out here too. I was just ramming them in all at once. I had no clue when to take what and how many hours after ridiculous o'clock I should take what with what and that with that. Nobody told me I was doing the wrong thing. It was written in clear English here and what a difference it made.