Post thrombotic syndrome work/pip mobility uk

Allergies, blood and immune system
1

Hi

im 30 male uk and was diagnosed with DVT in my left leg in 2010, about 3/6 months later had multi pulmonary emboli in lungs and soon after pneumonia. Then in 2011  i was diagnosed with reoccurring clot.

 Since that day my leg swells 4 to 5 inches bigger then my other leg after i stand or walk for a abit. 

Im on warfarin for life and my INR is always in range 2.5 even with extreme swelling.

my leg is discoloured and has varicose veins and constantly warm and im still constantly short of breath. 

my legs like carrying round a log that turns to stone (dead weight) after a few hours.

Until last week i worked as a bouncer 2 nights a week (4/6 hours a shift) I'l get my final wage next week and then thats it.

Id get by mostly leaning on a wall and standing on 1 leg because of the extreme pain.

Id see people mocking (laughing in my face copying me ) how my leg appeared when swollen and when i walked (it looks like im walking with a prosthetic leg when swollen.

The pain gradually increases until its extreme!!!, it hurts unbearably just to take a step after a while.

I have to sleep for 2 days and elevate my leg for the swelling to go down and the pain to go away.

As the pain increases i cant fully stand straight on my left leg and my knees buckles when swollen.

My haematologist said i had post thrombotic syndrome.

The only benefit iv ever claimed was some work sick support (dnt know the name) for 2 months when i originally got my dvt and was off work. 

I continued to force my self to work even though i could honestly cry from the unbearable pain (standing 5 /10 hours ...the torture !! physically and mentally sealing my lip so no one notices (i would have been removed if i appeared weak and unwell) so i could buy my warfarin.

But im at wits end,the pain is the most its ever been and has become unbearable.

I wanted to know if i could claim personal independence payment mobility or any other benefit (uk)?

i looked at the pip form (it seems like id score zero on mobility) as i can walk 50m 200m at the start of the day. I have to stand/sit or walk for abit for my swelling and pain begin.

it can take 45 mins to 3 hours to reach the point i cant move at all and become immobile so i didnt know what to answer on pip online test.

please advise.

eternally greatful..

2

Firstly must say that you are extremeny brave having been through what you have. Unfortunately I am. It in a position to advise you on your specific problem ( am very sorry). The only thing I do know is that you could maybe go to a citizens advice who helped me with my questions about benefits for an aged relative.

In terms of post thrombotic syndrome, have you tried wearing support stockings and trying to do exercise like swimming and walking? It seems though that standing for long periods clearly is not good for you. There is a new treatment offered in London for post thrombotic syndrome which involves putting in a stent. See earlier posts from Sheila. Wish you luck in your continued struggles.

3

Sorry to hear what you are going through. I guess all you can do is try but I do know is they are very strict nowadays.

I personally would give it you but it isn't my decision.

I have loads of warfarin if you would like it? I'd post it to you for free? Let me know

As the post above says you could possibly ask if they could stent you. Ask your doctor for a referral to Michael Black at at Thomas in London.

Wishing you all the best!

4

Hi Dager sorry to hear about your difficulties. I too have PTS and my foot and leg feel like lead after standing. With the PIP you need to answer the questions as if it was your worst day rather than as if you were ok. In order to give them a true sense of your disability you need to tell them how it is at it's worst. I don't understand why you have to buy warfarin. Surely your GP will prescribe this? Sorry if I have got the wrong end of the stick. Good luck. John

5

Hi Dager, sorry for your condition, certainly sounds like PTS. I have written loads about PTS as my son was badly affected a few years ago. He was diagnosed and treated by Mr Stephen Black at Guy's and St Thomas' hospital London. He had a stent in his vein which opened up and supported the vein so the circulation improved. He has  much improved. I have written on here the details of his recovery. Can't help with benefit, but sounds as if citizen's advice would be a good start. Good luck, Sheila. 

6

Hi dager!

You can claim pip for PTS. I have the same condition as you. I also have had a extensive blood clot in both my legs, the first clot I got in my left leg in 2014 went to my lung causing pulmonary embolism, my second clot I got in my right leg in 2016. I have a blood disorder called protein S deficiency, which I didn’t know I had till I got the dvts. I used to be on warfarin until they changed them to xarelto, which I’m on for life. I literally had to learn to walk again, which is a very slow and painful thing to do. I got enhanced rate on care & mobility pip. 

7

Hello Dager

You could try to get "Attendance Allowance" first.  Apply for documents in the post not online & then get an appointment with your local Citizens Advice Bureau, as they are experts in how to properly complete all Government forms for benefits.

Take all medical appointment & consultant letters with you & ask someone you have known for sometime to do a support letter on how your health has change over the past 8 months or more, paying particular attention of how difficult it is having a bath or shower - getting up in the morning. Any struggles to experience. Standing for any length of time. Do you get extremely fatigued & breathless on exertion.  All these things are taken into consideration.  

The CAB will assist you by asking questions you make think are not relevant & write it all up for you.  The Government bodies only function on facts & not emotions otherwise everyone would get everything they asked for.  The only thing you must be aware of is the documents they send will have a "Be in by Date" usually 6 weeks.  So, get onto it straight away. Set up your CAB appointment & good luck with it all. 

I have a propensity to clot so my health has deteriorate over the past 8/9 months.  Have previously written much on my conditions which you can access by this site, including DVT's.

The Best Of Luck. Be great to hear if you did apply. Attendance Allowance Telephone No: 0345 605 6055.

This is to get them to send forms in the post.

Regards

Christine

8

He cannot apply for attendance allowance, that’s for 65 and over, he said he was 30. He has to apply for personal independent payment.

9

Sorry Dager.  You’re only 30 cannot apply for Attendance Allowance. Still try for PIP though using CAB.   I do apologise for not reading your post properly. 

Regards

 Christine 

10

Thanks for that Maria. My mistake. Did not read post properly. 

Regards

Christine

11

Hi, I’m very similar to yourself. I suffer from factor V Leiden a genetic condition that causes my blood to clot a lot easier. I’m on warfarin treatment for life and was diagnosed in 2023 with PTS. My leg would swell and hurt and I’d suffer pains from what I would describe as similar to Growing pains to absolute burning sensation in the back of my calf. The pain was getting so bad daily and I would cramp in my legs multiple times a day. I was once a chef so on my feet 12+ hours a day and now I’m currently out of work recovering from a massive haemorrhage on my kidney that almost killed me. I truly do feel your sentiments on how you feel. You can work and claim pip, I’m also on pip but I am now resigned to using a walking stick and wheelchair for mobility as the number of Pulmonary Embolisms and DVT’s I have suffered has caused major damage to my vascular system. I can honestly say my life is no longer the same from being an active chef, keen gym goer and 5-a-side footballer to practically unable to walk most days has took a lot from me and my young family. Unfortunately it’s my kids who suffer as I am no longer able to get around like I once was which makes days out a nightmare. If you do apply for pip you must describe your worst days and state how it effects your daily living habits and any help you may receive from carers or family. Being able to walk 50m or less on your worst days would qualify you for the mobility element. I hope this helps and I wish you better health for days to come!