Long-COVID rehab

[Milliecox]

I would be interested to know how many people with SLE/SLE like illnesses actually get rehab or employment support without asking - I think we need to make the point that people with SLE (and many other illnesses, conditions and disabilities) generally get no structured support to deal with very similar symptoms (particularly fatigue) to those with Long COVID and certainly no employment support - we need to highlight whilst this is a hot topic- Paul can LUPUS UK - make this point?

[KayHimm]

Very interesting. Covid is certainly bringing to light the way so many people are forced to cope with chronic illness with or without financial assistance and other services.

I was told two days ago at my first pulmonary visit that I would be on the list for the Covid program - whatever that is - at the medical center. I actually did think back to how I could have used a « program » when I felt much worse in the early days of UCTD.

K

[Milliecox in reply to KayHimm]

Thank you for your comment and your linking with needs of people with lupus like illnesses/UCTD - rehab should be needs not diagnosis ...and I hope the COVID-19 pandemic will help to highlight needs of those with long-term conditions

[Spanielmadlady]

.i have read so many accounts of how these people are suffering with fatigue,brain fog and breathlessness and I say to myself....welcome to my world I've been suffering like that for years ! And have pretty much had to get on with it.....my employer didnt even mention making adaptations at work for me but instead told me I would face disciplinary action if I was off sick too much 🤬

I passed comment in a post earlier in the pandemic when the after affects of covid were coming to light that i hoped it would mean a better understanding, support and maybe even more treatment for people with chronic illnesses.i still have my fingers crossed 🤞🤞🤞 xSMLx

[KayHimm in reply to Spanielmadlady]

And the effects may not be so different from what we have. The pulmonary doctor I just saw said they are speculating the type of lung issues I have is actually an autoimmune response to the virus. They are doing antibody tests on people now, trying to get a handle on what is going on. Rheumatologists seem quite involved too.

Xk

[Spanielmadlady in reply to KayHimm]

I think it's only a matter of time before we hear the term covid induced lupus.i have intrathorasic lupus where the lupus has damaged my lungs and led to thickening at both bases x

[Milliecox in reply to KayHimm]

thank you they definitely are - it is an inflammatory response with autoimmune features, we have an autoinflammatory response but we should clearly be getting rehab

[Milliecox in reply to KayHimm]

WE need ask for rehab and raise it with politicians and news media - do hope all goes well for you

[svfarmer]

Too true xx

[Milliecox in reply to svfarmer]

Thank you agreed - we need to let people know

[Spanielmadlady]

Pulmonary rehab is available Ive done it after a bout of pneumonia that's required hospitalization and if you stick with it it's really worth while

[Milliecox in reply to Spanielmadlady]

yes - great point, pulmonary rehab very useful and very underused - if you can get this will probably help with lupus fatigue as well

[Hamptons]

I have SLE and now join the ranks of the long Covid sufferers, I have been fascinated by the responses to the Long Covid patients who had no underlying conditions. Like Spanielmlady has said, I had hoped Covid would bring greater understanding for Autoimmnune diseases as it is like an autoimmune disease and Effects so many areas of the body.

There is as always a geographical divide in response as London, Sheffield/North and Oxford have established rehab programs driven by research. They have fatigue support, lung rehabs and nutritionists and other services working together. How fab would that be for a An autoimmune patient.

Many of the sufferers report neurological and cardio appointments with consultants within 3 months of contracting Covid and some of these were not hospitalised. Again, how long did some of us wait for investigations or should I say wait.

There is a strong movement using alternative therapies, including histamine/fodmap diets, taking antioxidants and vits, D,E and b12 supplements as well as taking electrolytes. All who have seen positive results. I have experimented with a new previously unknown supplements that they have had success with but as mentioned last week it is expensive to buy all that is needed.

However, the sadness, is many need work support and financial assistance and believe there is a system that they can tap into As that’s what the news tells them. However, like us they are finding PIP and other payments are elusive. Also, they battle HR telling them to come back to work and refusal to understand symptoms of fatigue and chronic pain.

I hope the long Covid Awareness will improve our services and knowledge. Firstly as I am now one of Long Covid sufferers as my lungs appear to have long term damage because things were ignored at the start, (Not from malice but because my GP just did not know he was learning each day as all medical people were, this was a new illness and xrays were clear so what could he do for the unseen). But, secondly as a person with SLE, who like so many of us has struggled to find practitioners with awareness and understanding of AI, who has had to educate employers around my limitations, and managing the lack of understanding of the general public and people around me. Maybe this will be the time of enlightenment for hidden disabilities.

Sadly, my area has no plans for a Covid rehab despite being an area in the top 3 worst hit at one point but that’s finances.

It is strange to think that we may one day be grateful to a horrific illness for educating medical teams to improve our future as autoimmune patients. Whoever imagined that plot twist?

[Milliecox in reply to Hamptons]

Thank you for your thoughtful and helpful comments I too hope that the interest in the symptoms and psychosocial problems caused by covid - which are partially being addressed because of the numbers involved simultaneously will spark an interest in rehab and understanding for people with all conditions who need rehabilitation - I think that organisations that represent people with lupus and those with SLE need to make that link publicly too. So many people with SLE (and other conditions) do not get that help and support.

[heatherevans28]

I'm not sure what you mean by rehab but I have had loads of physio input, occupational therapy and lots of employment support (letters of support, adjustments, OH, and PIP) over the years without asking for the majority of it. My consultant referred me for different things as they became necessary.

I'm not aware of any unique support for covid and am personally believed to have had it by my medical team. I was hospitalised in March with all the classic symptoms and pleurisy but not tested. 6 weeks of symptoms and then made a full recovery. It is a serious virus and like all nasty virus can cause post viral illnesses which last months or years (post viral fatigue, pots, breathing issues etc). I hope it will bring more awareness of these, but sadly a lot of media is reporting these as if they are unique to covid which is very misleading and could limit the positive awareness power it has.

[Milliecox in reply to heatherevans28]

It's really good to hear your story of support and rehab without even needing to ask for it - sadly that is not the general experience of people with SLE - they have to struggle and be persistent to get it. Introductory talks by specialist nurses for the newly-diagnosed are much more common (many funded by LUPUS UK) but there is little attention to the psychosocial impact of SLE. Many do get letters of support from their treating doctors and GPs but this does not translate into getting PIP or benefits that they need - most would be happier if they had the support they need from Occupational Health and employers to stay in work (or work with some benefit support - see how the new scheme to subsidise part time work, which at least gives the principle a test).

You are quite right the media does not make the wider link between symptoms and employment difficulties of those with COVID and those with other autoimmune/post-inflammatory disability or the large numbers of people with other conditions who struggle to get rehab. We need to make that link where we can (though not sure how likely to be published I admit).

The early retirement figures for people with SLE are variously quoted at 59-80% and yet there is little data on how to support them stay in work. Worth googling employment and Lupus or benefits and lupus, for some rather depressing figures

[Milliecox]

I agree with you that LUPUs and autoimmune diseases (and many others) are not understood by many in power - whilst we cannot expect them to have knowledge of every illness they do need to understand the variety of impacts of disabilities and long-term conditions instead of thinking it is all about equipment - also there is lack of rehabilitation - let's hope the COVID 19 epidemic changes all that - there is going to be shortage of money to pay for things but also the will need to help people back into work.

Work practices which should benefit people with SLE (e.g. home working) have become much more acceptable.

[stiff19]

Glad you posted this, I hope those in power do listen 🤷‍♀️ Either that or we will be pushed back further in the queue for understanding , acknowledgement and help where needed .