Becoming disabled?

[Souffle]

I have had mobility issues for at least 2 years. I spoke to a doctor on the phone during the first lockdown and expressed my concerns that I soon would not be able to walk. I was told to do the usual; lose weight and exercise. Exercise is really hard as I am in a lot of pain with my legs and sometimes my back too. I diet but my weight yo-yos.

I’m finding it harder and harder to walk much and when I do I’m in pain. I really struggle to get off the sofa, out of bed and in/out of cars. I also find it quite hard to lower myself into a seat or onto the loo. I feel like walking down any sort of hill or slope is impossible unless I have someone to hold onto. I wouldn’t dare get into a bath at the moment as I fear I wouldn’t be able to get out. I can’t bend or crouch down.

You’re probably imagining that I’m quite elderly from how I’ve described myself but I’m 35 (in a 90 year olds body!)

I suppose I’m looking for advice on what to do. I have a doctors appt booked for 2 weeks time. I believe that I am disabled but my family just say things like “c’mon! Get up! Stop being silly, just put some effort in” and then laugh at my waddle! I want people to take me seriously and understand that I really can’t do something if I say I can’t. I also feel like I would benefit from maybe a blue badge and disability benefit in order for me to purchase some aids to help me.

I’d appreciate any advice xx

 

[Rayne]

What type of pain is it?
Muscular/ joint/ nerve/ bone pain?
Have you looked into fibromyalgia?

 

[Ethel's little Willy]

First of all, stop giving a tit about what anyone else thinks right now. I know that is difficult, believe me, I've been there.
Get all your symptoms down on paper. Every single little thing, even the really personal ones like wiping your bum or putting your knickers on, before you see your Dr.
I have been in a similar position for years. I lost mobility due to an accident and had discs removed. I was doing really well before the pandemic hit and my weight piled on like nobody's business!
You may be entitled to PIP and a blue badge. Also your local council may be able to help you with some home alterations to make life a little bit easier.
After seeing your Dr and if you do qualify for PIP then have a look at the disability sections on your local councils website.
I wish you all the best with this as I do understand your plight xx

 

[Silverplume]

I’m in the US, so am useless for real help like Ethel and others lovingly provide. But I did break my hip a couple of years ago and then a replacement a few months later, so I can encourage you to just do a little exercise every day. It keeps you from hardening up worse than you are. Look up “chair pilates,” which are easy exercises you can do while holding on to a chair back, or while in a chair.
Sprained my ankle pretty badly a long time ago, and still do the exercise I learned to strengthen my
ankles: hold out your leg/s and move your feet in a manner that spells out the alphabet. Works every muscle in that area. You can feel yourself getting stronger there, at least.
Try it with your arms and wrists, too.

 

[Ethel's little Willy]

Chair exercises are a great help as @Silverplume has suggested. There's some NHS one's on YouTube too xx

 

[Purrrrrrr]

I was once like you are. Every time the consultants and Drs gave me a new pill or potion I got worse, then would get another new pill or potion for the side effects then would get more pills for those side effects on and on it went I was diagnosed with many autoimmune diseases.


I was very depressed and remembered how much better my mental health was when I was eating very low carbs. So went back to eating very low carb /grain-free ( grain and sugar cause inflammation) That gave me the kick to look into my own illnesses and problems.. whereas before I was just too low to do that.


I stopped all my meds to see exactly where I was what was real and what was a side effect, then I went from there to investigating my symptoms and seeing what natural remedies I could buy or make.

anyway, I cured myself of many things that I had been diagnosed with. while I was ill I had gone from a size 16 to a size 34 ( each med had weight gain as a side affect plus loss of mobility stopped me being able to move very much) going low carb and stopping most of those meds has let me lose weight again and within a year I was a size 18 from size 34.. Do you know what those Drs told me? it was my weight that made me ill. .. that is how clueless they actually are. They do not look into root causes they treat symptoms and their "cures" create more symptoms..

I traced my above illnesses to having antibiotics and seems like this is well known.. All that was needed was to get my gut health better again as the antibiotics had killed all the good bacteria as well as the bad, causing something called leaky gut ..



the lastest thing was I had a bad foot and had a pronounced limp Drs have said nothing could be done as it was left too long ( due to covid) and gave me extra strong painkillers, steroid cream, special shoes.

I had one half-hour treatment of an alt therapy ( ultrasound) and my limp has now gone and I'm pain-free. Im very sad to say that curing you does not bring in money that is why they prefer to treat symptoms .. GPs do not have time to look into what a cure might be so they prescribe meds

I hope this helps you in some way.

 

[mixusmaxus]

I’ve been in bed for a month feeling horrendous and with very worrying symptoms like fainting, breathlessness and high blood pressure. Bad enough that it’s a win if I get dressed. Ive never been like this ever before and I rarely go to the GP. My whole life has been turned inside out.

I’ve gone to A&E multiple times as well as my GP only to be turned away with ‘anxiety’ or them rolling their eyes saying it’s psychological and I ‘just need to relax’ despite me saying ‘no, can you run some tests please?’ In that time I’ve had a serious allergic reaction to some antidepressants they insisted I take which left me hallucinating, passing out and violently shaking like a seizure (!!!) (which A&E refused to examine me for- they literally looked at me and said ‘you don’t LOOK like you’ve had a seizure’ and one particular incident in A&E which I won’t mention because it’s quite serious was basically medical negligence and a conflict of interests. Bad bad bad.

Anyway

Since sticking to my guns and nagging for the tests I wanted and paying for my own private tests that they wouldn’t do I’ve now found out that I have several serious/life threatening mineral and vitamin deficiencies which they could have easily checked, a serious UTI in my kidney which needs antibiotics (I refuse to go to A&E again) and possibly a chest infection now too. All of which I asked them to check. But no. They wanted to palm me off with the mental health card. When I told them what I’d found they were extremely defensive and could not take the feedback either. I will be complaining once I’m better.

My point being, as amazing as our NHS can be, and they are, they’re also effing useless sometimes. They’re all suffering from compassion fatigue (which is understandable) but the way I see it is that right now you have to fight extremely hard for any kind of medical care and to make sure you are telling them exactly what you need and not giving them the option to tell you what to do. Don’t give them the choice. Ask them direct questions is it this is it that? What could it be if it’s not my weight? Don’t rely on them to help or do the research or the right tests. Take your health into your own hands and keep telling them what’s going on until they listen. Phone NHS111 (who have been amazing I must say for me), phone charities. There’s also an amazing organisation called the honorary doctors association who offers consultant-led second opinions on doctors advice so if you think you’re being given the wrong advice or brushed off, they might be able to get someone on your side who’s ready to listen and help and advise your GP on what to do next. And that’s a charity/free so well worth a look.

You deserve, and are entitled to, your quality of life. I am so sorry you are being treated this way.

Oh! And look into a condition called Polymyositis (a Myositis variant). Several relatives of mine have it. Very similar symptoms to you, a disability, something that’s quite hard to diagnose and more common in women. Often flares up late 20-40s.

Myositis (polymyositis and dermatomyositis) - NHS

Find out more about myositis, the name for a group of rare conditions that cause muscle weakness.

www.nhs.uk

 

[Souffle]

What type of pain is it?
Muscular/ joint/ nerve/ bone pain?
Have you looked into fibromyalgia?

I think it’s a mixture of muscular, joint and nerve pain. I have looked at fibromyalgia as some of my family suffer with it but I don’t have the other symptoms such as “fibro-fog” so I’m guessing it’s not that.

First of all, stop giving a tit about what anyone else thinks right now. I know that is difficult, believe me, I've been there.
Get all your symptoms down on paper. Every single little thing, even the really personal ones like wiping your bum or putting your knickers on, before you see your Dr.
I have been in a similar position for years. I lost mobility due to an accident and had discs removed. I was doing really well before the pandemic hit and my weight piled on like nobody's business!
You may be entitled to PIP and a blue badge. Also your local council may be able to help you with some home alterations to make life a little bit easier.
After seeing your Dr and if you do qualify for PIP then have a look at the disability sections on your local councils website.
I wish you all the best with this as I do understand your plight xx

Thanks so much. That’s really good advice. I’ll make sure to write a list x

I’ve been in bed for a month feeling horrendous and with very worrying symptoms like fainting, breathlessness and high blood pressure. Bad enough that it’s a win if I get dressed. Ive never been like this ever before and I rarely go to the GP. My whole life has been turned inside out.

I’ve gone to A&E multiple times as well as my GP only to be turned away with ‘anxiety’ or them rolling their eyes saying it’s psychological and I ‘just need to relax’ despite me saying ‘no, can you run some tests please?’ In that time I’ve had a serious allergic reaction to some antidepressants they insisted I take which left me hallucinating, passing out and violently shaking like a seizure (!!!) (which A&E refused to examine me for- they literally looked at me and said ‘you don’t LOOK like you’ve had a seizure’ and one particular incident in A&E which I won’t mention because it’s quite serious was basically medical negligence and a conflict of interests. Bad bad bad.

Anyway

Since sticking to my guns and nagging for the tests I wanted and paying for my own private tests that they wouldn’t do I’ve now found out that I have several serious/life threatening mineral and vitamin deficiencies which they could have easily checked, a serious UTI in my kidney which needs antibiotics (I refuse to go to A&E again) and possibly a chest infection now too. All of which I asked them to check. But no. They wanted to palm me off with the mental health card. When I told them what I’d found they were extremely defensive and could not take the feedback either. I will be complaining once I’m better.

My point being, as amazing as our NHS can be, and they are, they’re also effing useless sometimes. They’re all suffering from compassion fatigue (which is understandable) but the way I see it is that right now you have to fight extremely hard for any kind of medical care and to make sure you are telling them exactly what you need and not giving them the option to tell you what to do. Don’t give them the choice. Ask them direct questions is it this is it that? What could it be if it’s not my weight? Don’t rely on them to help or do the research or the right tests. Take your health into your own hands and keep telling them what’s going on until they listen. Phone NHS111 (who have been amazing I must say for me), phone charities. There’s also an amazing organisation called the honorary doctors association who offers consultant-led second opinions on doctors advice so if you think you’re being given the wrong advice or brushed off, they might be able to get someone on your side who’s ready to listen and help and advise your GP on what to do next. And that’s a charity/free so well worth a look.

You deserve, and are entitled to, your quality of life. I am so sorry you are being treated this way.

Oh! And look into a condition called Polymyositis (a Myositis variant). Several relatives of mine have it. Very similar symptoms to you, a disability, something that’s quite hard to diagnose and more common in women. Often flares up late 20-40s.

Myositis (polymyositis and dermatomyositis) - NHS

Find out more about myositis, the name for a group of rare conditions that cause muscle weakness.

www.nhs.uk

I’ve just had a look at that condition but I don’t have any problems with the arms (apart from a bit of RSI from working on a computer all day) so I’m not sure.

 

[mixusmaxus]

I’ve just had a look at that condition but I don’t have any problems with the arms (apart from a bit of RSI from working on a computer all day) so I’m not sure.

The people I know with it don’t have all the symptoms either. For instance one of my family only has it effect their legs and hips- they have no problems internally, arms, swallowing etc. it can be triggered by something as simple as just walking a bit too fast. He’ll go to bed just fine, completely unaware, but the next morning he can’t move and will be in bed for 2 weeks waiting to recover. They do a biopsy of an effected muscle to see if you have it which can rule it out.

 

[Keikochan]

for the walking problems, do you think a walking stick might be of benefit? I have Multiple Sclerosis and about 4 yrs ago the pain & dizziness got so bad I had to start using one. I got a cute 1 from amazon for about €20 (it was the UK amazon though so there is plenty on their & I think £ is less then €). Anyways it has helped a good bit.
I really recommend you find a new GP. A good GP can make all the difference & believe me, there are good ones out there.
How did your GP visit go, did it happen yet?
Regarding exercise, would you be up for swimming? It is weight bearing (I think that's what it's called?) cos the water makes you float. It could be helpful to get you moving a bit & loosen up the muscles & joints. I know it can seem a bit overwhelming cos of fatigue but it might be worth it. You don't even have to do it weekly, it could be fortnightly or monthly, build yourself up ya know?

 

[chickhicks86]

Have you had a doctor's appointment yet?

 

[Souffle]

Hello,

Yes, I had the appointment. The doctor was great to be honest. He got me doing a few simple exercises to monitor my balance etc and was a bit baffled as to why I’m feeling this way when I can’t think of a cause. In the end he said it’s likely to be patella femoral syndrome which I’ll need physio for but warned me there’s a long wait on the NHS so gave me some exercises to do at home by myself. I haven’t done them yet as the pain is quite intense at the moment, so I’m scared to be in more pain. I’m having to drag myself up the stairs a lot more than usual and regularly getting stuck on the sofa

I forgot to add: I’m not sure the diagnosis is correct. It’s supposed to be like a sports injury but I can’t think of a time I’ve injured myself and my kneecap doesn’t hurt at all, it mainly hurts on my thigh, round my hip, across the top of my bum/lower back. Sometimes it can hurt down my shin too especially if I’m climbing stairs.

 

[justme7777]

I read this and saw my own life and hope this doesn’t panic or upset you.

My partner started suffering from chronic back pain in 2020 and due to Covid-19 concerns and restrictions never saw a doctor in person. He eventually got an X-ray and had a hip replacement but the pain continued. The consultant ordered an MRI and stage 4 cancer was diagnosed with the spread to his bones which was causing the back pain. He also was losing the ability to walk and his independence. He also had severe sepsis at the beginning of the year but he’s fighting on.

My advice would be to fight the doctors for a firm diagnosis that you’re agreeable with.

I hope you get well.

 

[chickhicks86]

Just from reading what you've posted above, could it be sciatica? It can be really quite debilitating! Especially if all your symptoms are down one side? Doesn't sound like what the GP has diagnosed to me, especially if it is affecting your life to the point that you feel disabled by it.

 

[Felix08]

Just from reading what you've posted above, could it be sciatica? It can be really quite debilitating! Especially if all your symptoms are down one side? Doesn't sound like what the GP has diagnosed to me, especially if it is affecting your life to the point that you feel disabled by it.

I was thinking this to or a hernia?

 

[Happy Lady]

Hello,

Yes, I had the appointment. The doctor was great to be honest. He got me doing a few simple exercises to monitor my balance etc and was a bit baffled as to why I’m feeling this way when I can’t think of a cause. In the end he said it’s likely to be patella femoral syndrome which I’ll need physio for but warned me there’s a long wait on the NHS so gave me some exercises to do at home by myself. I haven’t done them yet as the pain is quite intense at the moment, so I’m scared to be in more pain. I’m having to drag myself up the stairs a lot more than usual and regularly getting stuck on the sofa

I forgot to add: I’m not sure the diagnosis is correct. It’s supposed to be like a sports injury but I can’t think of a time I’ve injured myself and my kneecap doesn’t hurt at all, it mainly hurts on my thigh, round my hip, across the top of my bum/lower back. Sometimes it can hurt down my shin too especially if I’m climbing stairs.

Sounds a bit like sciatica. If it is then you'll need to make yourself move in order to untrap a nerve. Have a read about sciatica and see if the symptoms coincide with your problems.

 

[Souffle]

Thank you for all the replies. I’ll have a look at sciatica symptoms. I’ve had a bad back on and off for years as I worked as a carer about 12 years ago and ruined my back in the process. I did some damage last Xmas as well, I twisted getting something out of the car and then was in agony for a good few days and couldn’t stand up straight. Maybe that’s got something to do with the pain being much worse over the past few months? I hadn’t related the two until now.

I really appreciate all the advice xx

 

[chickhicks86]

@Souffle how are you?

 

[Souffle]

@Souffle how are you?

Hi, thanks for asking. I’m still in a bad way, probably worse to be honest x

 

[chickhicks86]

Oh bless you Have you been back to the docs?