Autoimmune system and nerve pain

[Mill1234]

Hi there, I’m new to this forum only due to intense googling the last 13.5 weeks and stumbled across PMR + temporal arteritis. Apologies in advance for the long winded post.

I suffered Covid back in December and was unwell for 3 weeks and then managed to return back to work in January although never felt 100%.

At the beginning of April I started to experience dizzy spells throughout the day and vision issues. They were brief but as this happened multiple times it became alarming. I collapsed and was admitted to my local hospital that evening. Basic tests and discharged. Within a few days I could barely walk accompanied with stiff neck, severe head pain/nerve sensitivity/ facial jaw & eye pain/ constant dull ache in my back of which I can barely lie down.

Daily Hospital visits have become the normal and and many admissions to add to that. My system has been deteriorating over many weeks and then at the end of May I had a nasty seizure and had stroke like symptoms but they reversed quite quickly. I knew something was going to happen that particular day as my body was just not functioning properly as well as the pain in my temples / head was unbearable.

As the weeks have gone on I still am unable to move my neck, aches in my shoulders, thighs , hips , and occasionally have lost the feeling of power. My legs can often feel like heavy dead weights & experience flu like symptoms but without a cold but often break out into clammy sweats. My throat & chest muscles also feel affected and have days where I feel pressure at the front which just doesn’t feel right.

Fortunately I have private health which has been great for accessing scans quickly , which have all come back clear but have just not managed to come across the right physician who will help. On Saturday I even made an appointment with a neurosurgeon to review all my brain, neck & spinal scans and obtain a second opinion as I’m now quite frantic at how debilitated I am as well as the strange feelings, turns, constant phased vision daily issues and overall how unwell I am.

The Neurosurgeon believes my autoimmune system has been attacked and in return it’s attacked my nerves.

I spoke to my GP this morning to advise I have secured an appointment with a Rhuematologist tomorrow but he suggested I don’t get too focused until I meet with this Dr & diagnosed. The support these days is so poor and frustrating. I’m jumping through so many loopholes of self investigation to get a diagnoses as I know my body and system are so far from well. I have not had any previous health issues up until this point but now feel the last 13.5 weeks has taken its toll physically & mentally as I’ve lost a lot of weight as well as my confidence and identity due how poorly I look and feel and also the scariest / strangest euphoric experiences I’ve encountered. There is days where I cannot control the dizziness, feel like gravity is moving, bed feels like it’s shaking/tipping/sinking / balance is way off and I am so scared to be left alone and that’s on top of how I even feel from the neck down. Has anyone ever experienced this ? It just feels so abnormal and worrying.

My hope holds onto tomorrow’s visit and hopefully I am diagnosed and treated to try and resume some normality 🤞

[SnazzyD]

So sorry to hear you’ve joined the growing group of people who have been adversely affected by Covid. You share in common here the feeling of being out of control as one’s body goes into a tail spin and some here will know what it’s like trying with difficulty to get a diagnosis. Your symptoms sound very complex with seemingly top to toe involvement and yes, where do you go? Sounds like with the seizures and stroke-like symptoms neurology is a good place to start and yes, Rheumatology also sounds relevant if there is an autoimmune component. There could easily be a crossover between the two. Some people here with GCA symptoms have had to do both types of docs to help with diagnosis. I’ve read on some long Covid groups that steroid treatment has helped. Covid is known to activate the immune system in such a way that it turns in on itself and autoimmune conditions are probably on a spectrum with a pick and mix aspect to them. PMR and GCA involve an autoimmune vasculitis that involve muscles and parts of certain joints that give great pain usually around the hips and shoulders as in PMR and the head arteries in GCA. Im not an expert but I’m not sure your symptoms sound like textbook GCA or PMR, but who knows. Often with these things, blood samples come back normal.

Have you tried or been given any medication for the dizziness and a world that feels like it’s moving that are similar in effect to travel sickness meds? Strong ones can be got on prescription or weaker ones over the counter. That’s another thing from long Covid Facebook groups that seems to help some.

[Mill1234 in reply to SnazzyD]

Thanks for your response, I’ve already been round the block with a neurologist who was pretty dismissive after scans come back clear and suggested Noritriptyline which was intolerable and other than feel spaced didn’t feel any benefit other than it enhancing the Shakes feeling and making me feel dreadful. The hospital prescribed betahystamine for the dizziness but it did not help and I’m getting more days where it’s there constant and extremely overpowering. In the first 6 weeks I would not have resonated my symptoms in line but whatever is going on is extremely progressive and worrying and feel a lot of my symptoms now appear like it could possibly be. Again this is self research in desperation of help as I feel something is seriously wrong and each day is becoming more of a challenge as I need assistance round the clock. Covid may or may not have caused this I’m just unsure as there was a few months gap from returning to work to falling in ….

[SnazzyD in reply to Mill1234]

Autoimmune illness can take a while to build to specific symptoms so the causal event can seem unrelated and you do say you never felt 100%. I had Covid in March 2020 and it took 3 months to get the acute symptoms out of the way and my breathing got better. I was thinking I was over it then bang, 4 weeks later I had a relapse and did so every 2-4 weeks for 7months. That weird chest thing, I know, it felt like both an elephant taking a seat, major acid reflux, lung burn and chest muscle burn. Felt like crap but Long Covid was still on the fringe so nobody was interested.Like PMRPro, I don’t want to rain on your parade but it is quite likely you won’t get a definitive diagnosis and clear treatment. Investigations are limited to certain things and scans pick only so much and sometimes docs do take the attitude that if nothing shows up then the patient doesn’t have a legitimate concern. Some docs hate not knowing and that can affect their bedside manner.

Have you looked at ME?

actionforme.org.uk/get-info...

Have you been on any of the Facebook long Covid groups? One of the more positive ones is the Positive Path to Wellness.

[Mill1234 in reply to SnazzyD]

I don’t think it’s ME but I hear you around Covid. I will be happy to try and just get some meds to illeviate some of these symptoms.

[SnazzyD in reply to Mill1234]

They are still working out if long Covid and ME are the same thing but this list of neurological symptoms of ME seems to contain all your wide range meassociation.org.uk/2020/0...

Whatever you have done, get a copy of the results. Also, blood tests and some scans only look for what is requested by the doc. So if a doc says, “nothing came up”, the question is, “what did you look for?”.

[PMRpro Ambassador]

From what I have read, you have a version of Long Covid - and it is becoming clear that it can manifest in a lot of ways including parallels with PMR and GCA. Covid is known to lead to vasculitis - PMR/GCA are due to vasculitis and GCA can manifest as stroke as well. The other things you describe are not usual with PMR/GCA but they have been described in several articles I have read by Long Covid patients.

Covid is a virus - there is a whole range of autoimmune illness that can appear after a viral (or other) infection or illness which upsets the immune system and it becomes deranged, turning on your body and attacking body tissues as if they were foreign, leading to inflammation, damage and consquent symptoms.

I don't want to sound unduly pessimistic but even without the advent of Long Covid, autoimmune disease in general more often than not is difficult to diagnose, often taking years, and even more difficult to manage in many instances. There is no cure for the actual autoimmune disease process and they have to aim to manage symptoms as best as possible and try to prevent or slow any ongoing damage the autoimmune disorder is causing.

It isn't the doctors' fault - Covid has chucked a whole workshop full of spanners into the works and most of us have suffered as a result even with a diagnosis, in there being long waiting times for appointments. And few of us are able to access physio or other treatments that would be useful for us either. Welcome to the world of autoimmune illness.

[Mill1234 in reply to PMRpro]

Thanks, really appreciate your feedback.

[piglette]

Has anyone checked your inflammation markers in a blood test ie CRP and ESR? Also have you been prescribed steroids to check if they work? They are a wonder drug as far as PMR is concerned.

[Mill1234 in reply to piglette]

Not entirely sure of blood cultures but think they were basic and no steroids but thinking this could be an option to try. Will speak with Rheumatologist tomorrow and see if this is an option. Thanks again

[PMRpro Ambassador in reply to Mill1234]

CRP and ESR aren't blood cultures - they are inflammation markers.

[Mill1234]

Well I would say that’s a no then

[lillyofthevalley37]

Hi I just want to point out that the reason why females suffer from autoimmune disorders more than men is estrogen

It's not rocket science yet I have noticed this fact is being ignored

Estrogen is excititory and needs to be countered by progesterone preferably or other inhibitory agents

Are you on the pill or hrt ?

[Thezillionthsue]

There is a very helpful and supportive Long Covid group on Facebook. If you search Long Covid Support Group you should easily find it.

Sounds like you are going through a horrible and scary time. I hope you find the help you need and that things improve for you soon.

Unfortunately this is such a relatively new thing that the medical profession still doesn't know exactly what it is dealing with in many cases, but there is lots of research going on I think.

Good luck. Hugs.