Found out Friday that I have been awarded PIP , to say I'm shocked is an understatement, but soooo happy. Don't know what level as am waiting on letter with details.From my previous post about Osteoarthritis in feet. I had results of MRI and I haven't broken it as was mentiomed by Rheumatologist because i constantly limp with the issue ,but have bad degeneration all over foot.
Consultant said maybe I'd benefit from Surgery , so he has now referred me to a surgeon and we'll go from there.
Hope you all had a good Christmas and have a happy 2024 with more pain free or at least easier days than this year.
F 🤗
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Frenchi88
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I'm so happy you've been awarded PIP!! So many people are fighting to get it..... I'm one of the lucky ones as well, received mine 7 years ago, and hear nothing but sad, emotional, stories. Happy New Year my fibro friend... 🙏🏽💚
Oh bless you thank you 😊I thought it'd be a fight as , same as you, we hear some horrible unwarranted fights to get what they so deserve. Maybe it's who ya get on the day , I don't know.
What I do know is it shouldn't be as intimidating as it is and the sheer stress from going through it all is enough to set anyone back health wise.
I wish those who are still going or thinking of going through the PIP application the courage and determination to keep going .
It took me years to do it, for many reasons , I didn't give it a second thought that I was even "unwell enough" to apply , undeserving, scared and just the emotional ups n downs of going through the process.
In the end people just kept on and on at me so I did.
So ya just never know what awaits you after it's all done.
So keep up the process those of you and keep the faith that you are entitled and that you may very well end up getting what you so deserve. And remember when you have your assessment and they are asking all these questions.
Nobody knows you better than yourself so be calm and answer the questions
congrats on the PIP award. Regarding foot surgery for osteoarthritis, I found it a great help it certainly stabilised the ankle and straightened my foot. The surgeon I saw was obviously passionate about his craft and told me he had taken a video and did I want to see it😱. I didn’t take him up on the offer😂
Hey DinkieI was interested in seeing if anyone had this kind of surgery, to see what degree it did for the good and the time to recoup afterwards to see if it was worth having done, which for you seems to be a big yes. That's great news if it helped you in such a big way.
I think I'm with you in the not needing to see he's handy work in progress not what my stomach could handle
Thanks for your reply I appreciate you mentioning the Op and what it did for you.
I am interested in your foot condition, my podiatrist picked up on foot changes, my toe is numb, inflamed and separated from other toes , which results in my foot buckling and I can occasionally stumble. I was advised to apply for PIP by universal credit as I am being plagued with autoimmune issues but I was turned down before as they said you can get dressed by yourself and can take care of yourself. Some days I feel so fatigued by pain I may pop a painkiller but to them , the lack of dependence on pain relief and ability to dress myself regards me as not in need for PIP. I admit I can have some good days but in general I’m dragging myself about and putting on a brave face to the world. The cost of supplements alone to try and navigate my health plus the menopause too is so tough financially!
Was it your foot and the Fibromyalgia that won you the benefit award?
Hey tje2611Apologies for late reply had a bit of a weekend with one thing or another.
With my PIP I was awarded standard for Daily Living and Standard for Mobility.
For mobility I got a score of 10 out of 12. This is because I have limited walking before I have to sit, rest. I walk with a walking aid all of the time now because of my foot (right one is main problem) and for Osteoarthritis in my lower back too.
So I think for the 10 out of 12 it was my mobility that played a big part in my being awarded.
FIBROMYALGIA !!!!
My Fibromyalgia doesn't effect my walking that is (I think) solely the Osteoarthritis, but hey who knows !!!
My Fibro hinders how I get dressed depending on what extremities the pain is on any particular day.
If I have pain in my shoulders neck and arms I will need help with clothing top and bottom.
If its in the lower body I will need help with bottoms, trousers etc
My Rheumatology Consultant told me I have quite bad degeneration of my metatarsal and in my instep and coming up from base of my toes. He has now referred me to a consultation with a Surgeon to see if Surgery would help with this diagnosis.
OSTEOARTHRITIS !!!
At the moment I have no disfigurement in my feet it's all looking normal outside but not inside.
FATIGUE !!!
Fatigue is a major issue for me also. But when I had my telephone assessment she didnt seem to mention , so whether that would help with PIP I'm not sure, maybe somebody would like to comment on that.
PAIN RELEIF!!!!
Now plan relief for me is a real no no to most pain meds as most of what I have taken in the past doesn't agree with me.
I get stomach pains and feel nauseas so I use a pain patch called Versatis which I told her isn't even prescribed for me but given to me by a friend and they do help somewhat . Occasionally I do have to take over the counter oral pain meds when they aren't enough.
I also stopped taking Amitriptyline years ago as the "zombie like" feeling it gave me was too horrible to continue.
My Rheumatology Consultant actually gave me a name of an alternative anti-depressant (at least I think it is) but I forgot to ask him to write it down for me and he didn't mention it in he's letter after singing me off, so I have already called to ask if they could get the name for me. So I'm waiting for them to get back to me on that.
But it's supposed to be "zombie free" meds which I'm keen to find out.
GOOD DAYS !!!
Now when I had my assessment she asked me about "good days".
I said to her that for me (and I'm probably correct when I say this for most) that there are no "good days" maybe better days or less worse days and that phrase can be very misleading.
So I NEVER say "good days" because for me I'm always in pain somewhere and that to me isn't a good day. A good day is a pain free day or a very low pain day and for me they are few and far between.
COST OF PAIN MEDS ETC !!!!
You know what, for me that has been one of the major factors.
When somebody says "you should try this , you should try that" and then I purchase and they don't work ,that is money wasted and which I cannot afford to keep doing.
I'M NOT, BY ANY MEANS, ungrateful to those who have suggested things but my income maybe hasn't been in the same bracket as some or they have been on some kind of aid and up until now I wasn't. So I completely understand your comment on that I'm totally with you.
Sorry if I've repeated myself from my other post, I'm going through your message step by step and answering the best I can 🤔
So I hope I've helped you somewhat with my reply, if I haven't addressed anything please let me know and I'll do my best.
Here's hoping you Guy's and Gals are having a better day this Sunday
Thank you for your detailed response, so kind of you to run through it, it helped me to understand the process.
I may have misunderstood, so the degeneration in your foot is not Osteoarthritis, but Fibromyalgia or Rheumatoid arthritis? Have your blood results indicated anything underlying? I was awake in agony last night with foot pain, the first time thats happened. My issue is numbing and a change in the strength and appearance, usually not this awful pain.
I have definitely deteriorated since being in two car accidents in the last few years. I was shunted by a car out of control at speed, so the whole body was shook. The other was a side impact as a passenger on my side, so mentally its been grim too. Thankfully I was not injured seriously but the whiplash has been really hard to get over and the impact has affected my spine and neck which was already deteriorating and Osteo too; now I have episodes of nerve impingement - grrr! This will be a tough one with the injury lawyers as the Govt have changed things, putting a ceiling on whiplash claims to about £1500, which is nothing as the result it has on long term health is not really considered.
I do think its worth having a go again at applying for PIP, as the accidents alone have changed my health drastically as well since I applied previously
I appreciate that you have been advised to take certain supplements, but I cannot not mention one I take, that has kept me 'up' during a tough period in my life, issues in business , loss of pet and financial struggles, and the accidents. Its an amino acid called Ltheannine. I swear by it! I have not had depression despite all this and if I stop taking them, I notice my mood dips drastically. Lots of info online about it and isnt much more than the cost of an NHS prescription.
Good days - yes you are right, when I say good days, those are days that I have a little energy and can get through the day with only background pain. Those days are less and less as the months go by. I wonder if winter is part of the reason. Because I was on Hydroxychloroquine for a good year, I was able to live well, since being taken off it, I have not had such consistency. I have seen several Rheumatologists, all with varying opinions, the latest blaming menopause! I am going to push for a re- referral for sure.
Hey No I think its me that was maybe bit misleading as I re read my reply.
It is Osteoarthritis in my foot with quite bit of degeneration.
The Tarsometatarsal joint which are connected to the toes has Osteoarthritis.
Also Bone Marrow Oedema which is fluid in the Bone Marrow.
Also has Peroneus Brevis which is a muscle that can be overused or which is in my case injured with foot injury twice as in ripped tendons etc.
Blood Tests
I haven't actually had bloods taken for any of these results , more the side of scans , x-rays
Good Days
The "good days" I reckon can be very misleading and maybe would lead people to think that we do have days/weeks etc without pain at all, which for some of us can be true when we maybe having a hiatus but not when we don't.
So the phrase "background pain" is a good way to put it.
Weather !!!
The weather for me, has no baring on the way my pains affect me.
We lived abroad for 8yrs and some of my worse times were while we living there. Maybe while we were living abroad because my Fibro was in my head,neck, shoulders it was made worse by heat what with the headaches.
That pain in the upper extremities was and is for me personally the worse pain that I suffer with regarding Fibro..it is horrendous.
Menopause !!!
I myself am going through the Menopause and as we know some of the stuff we go through with that can also be Fibro/Osteoarthritis related so it's difficult to tell what's what anymore.
I've had Fibro since I was a child under 10 and have recently had Fibro (officially) diagnosed in the last 4yrs so have had lots and lots of "turnaways" because they didn't know or want to know anything about Fibro.
In fact most of the time they just sat across the table with a vague stare and smiled and the changed the subject.
I absolutely think you should re-apply as your condition has changed, have more issues, and the suffering has worsened by the sounds of it.
I wish you the best with your next try and hope you'll get what you deserve and wish you some relief from all this 💩 we have day in day out.
Hi, Oh no worries, good to know. The strange thing is that foot x rays in 2022 showed nothing yet I am experiencing this. I wore a pair of boots the other day that I have worn for years and now they hurt on the instep and across the toes and I struggle walking in them too, so something is not right!
Interesting that the heat did not help with the pain, some move to Spain as the climate suits their condition. Our damp and dismal UK in Winter is not our friend! I have yet to test this myself as the last time I was abroad in the hight of summer was about 5 years ago, its been short breaks in colder months usually.
I am going to try PIP again. Thank you again for sharing your experience
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