PIP, covid and SLE: I have just read that long... - LUPUS UK

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PIP, covid and SLE

suzannah16 profile image

I have just read that long covid patients are getting PIP, which is so similar to SLE that the average person would not know the difference, whereas I have been turned down for PIP. They don't even have had to have a positive covid test or official diagnosis yet we have years of treatment and appointments and don't qualify. To say I am frustrated doesn't begin to cover what I feel right now. I really feel I want to claim I have long covid even though I "only" have lupus etc.

48 Replies

I totally agree suzannah - it’s outrageous and an insult to people with chronic conditions like lupus 🤬🤬 such a cute pic of your gorgeous doggie xx

I hear you - all the fuss about Long Covid patients and special clinics and the rest of the stuff while existing autoimmune patients aren't even getting ongoing care.

Treetop33 profile image
Treetop33 in reply to PMRpro

Not everyone is getting care for long Covid. Postcode lottery, I understand (much like AI in general).

PMRpro profile image
PMRpro in reply to Treetop33

No, of course not - but the government is making a big thing about it because it sounds good.

Treetop33 profile image
Treetop33 in reply to PMRpro

Well of course. That goes without saying!

🙄

What a wonderful picture and such a beautiful dog.

I understand all the frustration about how we are treated with lupus as well as all the other things that crop up with it, but I have lupus and long haul Covid as well. I am in the states and have gotten no help. No one even knows how to sort out or what is what and my doctors acknowledge it, but don't want to talk about it as they have no answers other than to take over the counter stuff for the symptoms, except of course, for the not being able to taste - no over the counter stuff for that.

I got Covid last November although I did not go out, but my husband did. He and his relatives got it, but did not lose taste and did not get long covid. It seems to me that Covid attacked what were issues I already had and made them worse so nothing can be sorted out as to what is what. I for one don't even know what I believe about what we are told about Covid. All I know is that people don't understand autoimmune chronic conditions and are not compassionate and for me now, adding long Covid, They don't get that either. If they had Covid and then are all right, they can't possibly have any understanding of not getting over it in a few weeks. I am not saying people with long Covid should get special treatment over people with lupus, etc. We all should be treated with good care and respect. Having dealt with lupus for over 25 years, my belief in the medical profession has been tested over and over.

My pets are what show me care and unconditional love, thank goodness.

Healing hugs.

how do you know you have long covid? I don't think we have any tests here that can tell, so how do you know it's different to lupus?

You don't need a test if you have symptoms that don't resolve from Covid and your rheumatologist, GP, Endocrinologist, ENT doctor feel it is long Covid after you have Covid . Also, the meds for lupus don't help. Any symptoms already in place from lupus become much worse. Some of the symptoms that have lingered are heart arrythmia , constant sinus symptoms, nausea, chronic explosive diarrhea, no stamina, weakness, neuropathy worsening, , tinnitus ,lack of smell and taste, etc. I am not mentioning fatigue or joint pain because they can't be separated from lupus. There may be another reason that Covid has caused and my GP is considering a consult with an immunologist/allergist.

I am not defending the medical community at all on how they treat women and autoimmune diseases. I have left many appointments feeling such despair. My first rheumatologist who diagnosed my lupus said you will come and see me, I'll stare at you and you'll stare at me and I'll write the prescriptions. I stayed with him until I was able to find a new one. Also, if I were a man, I would get more compassion at least having long Covid . When I first asked how long can this last, all my doctors would say is it could go on for a really long time. Well, they have been right about that. Whatever research is being done, I am skeptical about. I think it is companies making money and getting publicity. As far as I know there are no medicines to treat long covid at all.

Healing hugs.

I have those symptoms from my lupus

Hi Suzannah28, Do you have lack of taste and smell from lupus? I have never heard of that. Do your doctors recognize these symptoms as lupus and treat them? i would be fine with that.

I am not saying you are wrong about many of my symptoms being lupus symptoms, but that is not what my doctors think. For them, it is all about the labs and fitting in the box. So I am in a catch-22. It doesn't matter what is what in the long run. All I know that I had Covid and from that point on, everything is worse. I wish at this point, I could just forget about all doctors, etc. And, I know that lots of people have it worse.

I am not in agreement at throwing money at Covid, but don't want to bash people who for whatever reason have lingering issues and as far as they know, no pre-existing conditions. What the media, politics, big pharmacies, etc. do is wrong, but not the fault of those caught in the cross fire.

Healing hugs.

my taste and smell come and go, I also smell and taste things wrong. a bacon sandwich can taste like plain bread and a roast in the oven can smell like cake. I also smell things that aren't there. I think it's neurological but my rheumy hasn't done any tests.

Does sound neurological. Mine is just not there. My GP has a patient that had a stroke that lost taste so he is interested in it, but so far no real answers.

Does your doctor help with other symptoms like sinus issues, intestinal and stomach issues, etc.? Willing to not just focus on labs?

Healing hugs.

my rheumy doesn't do tests or scans just decides on symptoms but I haven't seen her in 2 years. GP still unavailable

Again. Sorry. I said I mentioned you in a post, but realized I never sent it and hate to say this, but can't remember it now. Another frustrating part of lupus - brain issues all of the time.

Healing hugs.

I think what you are going through is worse than no taste and smell. I wish my doctors would consider symptoms over labs, but I don't see that changing. Also, even when labs change and show some kind of pattern, if not out of the magic norms, who cares. Maybe they should consider that we are all different and not norms.

Have a good weekend and I really appreciate your posts.

Healing hugs.

the only reason she doesn't do tests is money, our local NHS was in financial trouble before covid.

That is not good, but at least she is listening to the symptoms. I think the symptoms for me are more important than the tests lots of times.

Healing and hopeful hugs.

Roarah profile image
Roarah in reply to Pumpkin2009

Hoping you feel better again soon:(

Pumpkin2009 profile image
Pumpkin2009 in reply to Roarah

Thank you so much.

Healing hugs.

I’m with you on this all the way.Fabulous picture 🤗

Thank you.

Healing hugs.

Thank you.

Hi Suzannah this is my first reply on this app and I wanted to say you’re not alone. I got rejected PIP many times for my MCTD and it’s honestly such a traumatic experience. Keep going though- with enough medical evidence they’ll come through hopefully!

suzannah16 profile image
suzannah16 in reply to Nory-J

Hi Nory-j, last time I tried for PIP I was too exhausted to take it further when I got 0 points. I couldn't get help from CAB or anywhere else. I think they hope we are too ill to keep trying.

Nory-J profile image
Nory-J in reply to suzannah16

It’s honestly aweful- I got 0 points twice too. Had to take them to court through a tribunal, and even that failed a few times! It’s super exhausting and I’ve cried so much over it but it is worth it trust me. Does make me wonder why and how benefit fraud is a thing with PIP? If we can’t get pip when we need it, how are people getting it when they don’t? Ultimately it’s a hidden condition and you are being treated unfairly

It’s because men get long haul COVID. AID have been tainted with a marker of hysteria because a lot of CTDs affect women more than men. And men still have the upper hand in society when it comes to influencing research directions. CEOs are rarely women and they are the ones who decide where to put resources and funding. Rheum has always gotten the short end of the stick. Long haul COVID differential care just makes it more prominent and visible.

Funny how when a disease affects men and women proportionately, it becomes a dire situation all of the sudden. 🙄

282523 profile image
282523 in reply to Jmiller623

So true. X

PREACH!🙌👏

I could explode with rage reading your post, have the last 100 years counted for nothing! If it weren’t for women they’d be no men!!! 😡😡

kt11 profile image
kt11 in reply to Jmiller623

Absolutely right on the nail x

I got standard rate PIP middle of last year on mandatory reconsideration after 3 attempts including a tribunal. I’m now asking for one more point to get enhanced rate. Immediately I asked I regretted this as I realise I’m now up against all the long Covid folk.

I could lose it, keep it at same or gain a few more points for disease progression. It’s a huge risk and one I’m regretting now enormously. I guess 18 months of shielding have taken their toll on my reality.

But next year we people in Scotland should be able to get it on strength of consultant’s letters and be assessed by people with no vested financial interest in turning us down. I’ll do what I can to keep if I now because I’m too ill and housebound to work. But if I do lose it when my condition hasn’t improved and I should have got enhanced rate anyway then I know I’ll be in a total mess. I’ve had my autoimmune disease overlap progressing for years now so it does seem very wrong that someone who’s only been ill for a short time should get PIP when we can’t but until reading this I haven’t really given LC that much thought re PIP tbh? Where did you learn that long Covid sufferers are getting PIP? X

suzannah16 profile image
suzannah16 in reply to 282523

that's what I'm hoping for, supposed to be happening in spring. do you know if the form is available anywhere so I can have it ready?

282523 profile image
282523 in reply to suzannah16

You have to phone DWP to get the forms sent by extra snail mail. Nothing from DWP is downloadable unfortunately - that would make it all too easy🙄

Here’s a link someone on a Scleroderma forum posted with descriptors that the DWP/ PIP assessors use. That’s all I can tell you really. Good luck! X

CAB advice - PIP

citizensadvice.org.uk/benef...

suzannah16 profile image
suzannah16 in reply to 282523

benefits UK, they help with filling in PIP forms

The only stats released so far are based on 34 claims which is an absolutely tiny. From those 14 got enhanced rates, so it's likely to be people left significantly disabled by long covid, not those with milder forms. PIP is a very unfair points system based on ridiculous descriptors but not on diagnosis, so it would come down to how long covid or lupus impacted the person. The evidence doesn't always mean very much in my experience.

That being said there's no limit to how many times you can apply. I would recommend you apply again and get a professional to do your forms. I applied literally the day after my tribunal was lost for the third time and was instantly successful, because a professional completed the form (the evidence used was exactly the same each time). I've had professionals do my renewals ever since and always got it without any issue, plus it takes the stress away.

Should say I agree that long covid is a very dodgy medical term. It encompasses so many different actual pre existing medical conditions like PVF, lupus, ME, POTS etc. We shouldn't be just sweeping everyone with long covid together and then pushing money at this new mythical condition.

I totally agree with you. I don't think long Covid is mythical as I had Covid and it seems after 10 long months, I still have some lingering symptoms. I do not think they will figure anything out and I think the pharmacies, politics, media, etc. are out for their own gains. It is divisive and creating chaos.

Healing hugs.

Hi again, I mentioned you in a new post - But I Look OK. Hope that was all right.

Healing hugs.

Again. Sorry. I said I mentioned you in a post, but realized I never sent it and hate to say this, but can't remember it now. Another frustrating part of lupus - brain issues all of the time. Have a nice weekend.

Healing hugs.

🤣😂

As someone with lupus and long Covid I am part of both forums. Many long Covid sufferers have been given PIP for their illness in the same way many lupus sufferers have. Others have been turned down and share the frustration I felt when I was turned down based on my Lupus symptoms despite my medical team recommending I should apply. Many long Covid sufferers have huge disability from heart and lung complications. Others are crippled by the fatigue. We need to be linking up with people with similar symptoms to show the government why they are debilitating. There are so many overlaps between SLE and Long Covid. I have joked that Lupus prepared me for Covid.

Both forums are impacted by autoimmune system and need to work together rather than see ourselves as separate.

282523 profile image
282523 in reply to Hamptons

I do entirely agree with this in principle. But in practice it leaves a sour taste when Long Covid has only existed for around 18-20 months or less as an identifiable entity.

Whereas many here and on other autoimmune disease forums will have suffered from same or similar post viral symptoms for many years and been turned down.

Similarly there will inevitably be resentment on same communities, that Long Covid is diagnosed by symptoms following the virus - whereas many here will have had years of misdiagnosis before finally getting the right diagnosis but still getting turned down for PIP.

We are all just human after all and I do think the length of time we’ve suffered for, often undiagnosed or misdiagnosed, is pertinent here because of the impact it has on our mental health as well as on our physical health.

It would seem fairer if the descriptors took the length of time we have been impacted by our symptoms into account - not least because there are other shorter term sickness benefits, clinics and therapies available for Long Covid sufferers - which may or may not transpire to last as long as the time many will have suffered from conditions such as ours or Fibromyalgia or ME.

I am just putting a realistic perspective out here. For instance I am not even sure if having been officially shielded is taken into account where it comes to our doctors being redeployed and related impact on mental health. But to my mind it really should take precedence over the more short lived suffering of those with Long Covid where eligibility for PIP is concerned - or else increasing resentment within patient communities, rather than pulling together as we should aim to, is only going to build up bydefault.

And of course I’m only talking about a far from ideal or fair system in a very far from ideal or fair world.

Pumpkin2009 profile image
Pumpkin2009 in reply to Hamptons

Very well said as you know I am also lupus and long covid. I also see that people in our lives that don't accept or try to understand what we go through with lupus have the same attitude about long covid, especially those who had covid and recovered. The really similar thing I am realizing more and more with Covid and lupus is when I have a day that starts better and I try to be a person, it takes its toll and reminds me it is still there.

Thanks again for your well-spoken posts.

Healing hugs.

I try to see it the other way that Long Covid is the giant marshmallow that they can’t ignite. In your face autoimmune and if that means progress it means progress. Ultimately the victims of long Covid are people that have horrific symptoms. That are spoiling lives. And if they help us all have better car in future that is a positive. Sometimes the way systems work is not fair and it does make us all angry but these are people, predominantly women who need medical help.

282523 profile image
282523 in reply to Hamptons

I try to see it this way too although I really can’t agree that their symptoms are more disabling or traumatising or serious than some of ours. I have lived with undiagnosed and diagnosed autoimmune disease for 58 years since I was born. My symptoms have been allowed to progress to affect every part of my body to some extent or other. My GI system is completely failing now from head to tail and this is a known fact but I still have not been seen face to face by a GI dr. I’ve had problems breathing (pulmonary fibrosis was starting pre pandemic) and high risk of heart failure and sudden renal crisis - but these aren’t routinely monitored as they should be.

So it’s hard for many of us to to see the marshmallow you describe.

What I sometimes do though is call out those medics who belittle long Covid and ME or claim to have made a splendid recovery from LC through power of the mind and targeted physio. These seem usually to be white male doctors of a certain age writing articles in the Guardian about how they cured their long Covid. Patient blaming is never acceptable no matter what the condition.

So I do my bit when stuff flashes up on my news feeds and am only making the point that PIP assessments (as this was a post with a question about PIP) should be designed to give those who have suffered longest a descriptor that counts. The longer we live with this stuff undiagnosed, under researched and untreated the more lasting damage we sustain so this needs acknowledging by the DWP.

Otherwise I think comparisons are futile and I too would like to think and hope that long Covid research will have a positive knock on effect on research into all autoimmune diseases.

Roarah profile image
Roarah in reply to Hamptons

I love that both you pumpkin do not look at the differing illnesses as a competition but rather see promising collaborative possibilities !

Pumpkin2009 profile image
Pumpkin2009 in reply to Roarah

Roarah, Thank you for the support. At the moment, I think they are joined together in my body having a party. From Pumpkin

Healing hugs.

HelloPumpkin. I hope your long Covid symptoms are are beaten up by your Lupus symptoms 🤔🤪One side wins and it’s the One there first lol. This is very serious. A family friend has been on oxygen tank for

6 months. Just back at work he is a veterinarian. He has always had asthma.

Now he struggles to breathe everyday. I

Think the medical world, my opinion, is overwhelmed in al aspects of care and research. I really pray those lupus AI symptoms kick Long Covid’s butt soon!😍

Titters

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