New Diagnosis.. ends years of frustra... - Charcot-Marie-Too...

Charcot-Marie-Tooth UK
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New Diagnosis.. ends years of frustration.. can anyone help on PIP


Hi all

At 54 years old I was advised last week that I have been diagnosed with CMT

A potted history:

At 4 years old was diagnosed as having rheumatoid arthritis... My Mum being Mum would not accept this and as I grew neither would I. Of course in life everything felt so much harder for me to do, but I just kept on keeping on.

Had migraines, and a heart murmur.

Sports at school I always ran away from, because they hurt. Bullied throughout because I was so "useless at things like football" but I got bye. I was funny... the joker... this got me through.

I had a gangly, awkward, gait, and big feet.

But my dream was to join the Royal Navy. I managed to get in through the medical at 16 in 1980... I almost failed the 6 weeks initial training but, as by this time i was wise on how to get around sports and gym stuff, blagged it.

The years to follow I continued to deny the pain the right to rule my life. I even played Rugby for a number of years... though recovery after each game took time.

At some point, my hearing diminished (now at about 50%)

I played golf. Again though, always with the slow recovery by comparison, and never accomplished a full turn or anything like.

Never been out of work, including physically demanding jobs. Again, ofttimes through gritted teeth. That's the way we all are I guess. We battle on. It's a hidden disability and people don't understand, including partners.

You are all familiar with the pain. The "numbness" - The Cramps.

As I approached my later 30s, I started to suffer more.

The hands, the feet. The joints.

2005 I had a series of neurological test, x rays, MRIs. Inconclusive, though the GP said they suspected I may have fibromyalgia! but we also know that there isn't really a diagnostic for this. So battled on.

Throughout, I also suffered back pain and sciatica. Eventually in 2011 having surgery to remove a prolapsed disc (L4 L5) which was complicated by a dural tear during the operation.

The dural tear has left me with a level of incontinence and a numbness in my seat.

I also suffered from erectile dysfunction, though that corrected itself over time, to about 80% functionality. (My marriage at the time had ended for many reasons, mostly me, Mr Grumpy. What did i say about partners who do not understand?)

When I came around after surgery, the consultant said there was a chance i would NEVER walk again unaided.... If I could have got out of bed I would have jumped out the window.

I hit the swimming pool, and through aqua-aerobics was back on my feet... Something I have maintained doing through the years. Though my gait is different again... and sciatica still a constant.

9 months post-op, back on the golf course, with a new swing that at least meant I could still play. It was a bit crazy psychologically every time i swung.. perhaps foolhardy. But i wasn't going to give up.

I took work in the middle east for 6 good years, meeting my wife and becoming a Daddy at 51! :)

I returned to the UK in October 2016 and gradually since that time things have gotten worse. High blood pressure to boot.

Diagnosed with Cubital Tunnel Syndrome in both arms/elbows (though the left is pretty much critical and the right not so bad) - In addition, the foot pain is excruciating most days. I struggle to get up and down the stairs at home, out of bed in the mornings, or to do pretty much anything without pain and discomfort. Driving still, but every time I change gear I feel my arm cramp further, my feet ache more, so much so that I took redundancy in the end so as to avoid a 1-hour commute each way each day.

I can walk about - with pain and discomfort - but i crack on. No golf, or little else to be honest. Caring for my now 2 year old boy takes all my energy and strength. I am looking for new work but my arm being the way it is, i wonder how i will do anything. Let alone the rest of the pain.

My wife is working thankfully though not highly paid, it's keeping the wolves at bay.

At my most recent visit to the GP where the diagnosis was suggested (i go to a neuro on Friday this week), he said that given the combination of all the above, i should review my PIP/benefits. I said "whats PIP". He was a little surprised to hear that i have never claimed any DLA or PIP.. and that I should consider looking into it.

That's why I am here :) Because I am ambient, but only with great pain and constant discomfort.

Looking at the PIP claim there is much that I still do for myself, but with a lot of pain and discomfort, and I hide a lot of it from my wife. PIP would help me and us in so many ways... the opportunity to change the car to automatic.. to adapt the bathroom so I can get in and out of the bath etc... so many many ways yet i look at the forms and really don't know how to answer the questions because I just crack on and do- because i don't want to be a burden.

Anyway, that's my story (in brief really) and just looking for any advice or support

Thank you.

3 Replies

Hi Flipper64. I don't know much about PIP but would suggest you make an appointment with your local Citizen's Advice Bureau, who will be able to help you with it.

in reply to DawnD

Thank you Dawn. I have 3 lots of medical appointments this coming week starting tomorrow so will await the full spec then reach out. Thankfully, as a veteran, they give some level of priority and I also have the Royal British Legion to talk too.

Hi Flipper 64, go online and put in Personal Independent Payment and you will get all you need to know - here is the number - 0800 121 4433. I was on DLA from 2002 (even when I had a full time job) until this year when it changed to PIP as I have a myopathy which is on the Neurological List of Diseases. I am now being investigated for CMT so that will add to the list of issues I have. Ask them to send you a set of Forms to complete, fill it in as thoroughly as you can and state how much pain and fatigue you have and all the difficulties of daily living. Also, phone your GP and ask for the Occupational Therapy Unit nearest to you. They came to my house to assess me and I got grab rails around the bath which helps with having a shower - our shower if over the bath (I cannot have a bath as have no strength to get in and out) and an extra stair banister rail to be able to get upstairs. We bought a heavy duty bath handle to help me get out of the shower and a non-slip step to help me get into the bath area to have a shower, these came out of my DLA award at that time. As I cannot drive I use my benefit to buy good fitting shoes and boots and good outer coats etc for the winter time. Make sure you say how bad things are and what effect this has on your mobility to, do not hesitate to over state your problems. I have only had 2 face to face contacts in 16 years and was told my award was indefinite. However, the changes to DLA to PIP has not improved. I am getting the Daily Living Award, buy they have now refused my mobility side of things, but I am now going to Tribunal. I contacted Welfare Rights via my Local Council Access Office and they are going to handle things from her on in. If you get the mobility side of things you can get a suitable care with your award - automatic probably - if you want that. Also, you can apply then for a Blue Badge for parking and access when out and about, plus you do not pay Road Tax if you get the higher rate of mobility award. I hope this helps. Go for it, it made a difference to my life. All the best.

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