View Full Version : My sister's anxiety related mysterious illness
I was wondering if any of you have had any experience or information on the following condition.
Background:
My sister has suffered from varying degrees of anxiety from childhood since she was badly bullied at school. She had an incident at work where she was attacked four years ago and has been in antidepressants since, specifically Fluoxetine (Prozac) at quite a high dose - we have recentally discovered that her meds have not ever been reviewed. She is also a sufferer from health anxiety but does genuinely suffer from ongoing issues, such as reflux, headaches, aches and pains...a lot weight related, as she is overweight. She is 35 but quite immature for her age in her ways of thinking and how she behaves, she is dyspraxic and I strongly suspect slightly on the ASC spectrum.
Recent:
She has had a bad cough and sinus issue for three months which she's had a chest xray for (all clear) and various antibiotics. Our grandma died at Christmas (101!), whom my sister was very close too. A few days after the funeral she came down in an all over body rash, pain all over her body, insomnia, pins and needles in her extremities, trembling. She was eventually admitted to hospital. All bloods and neurological tests were clear. She did have things like a throat thrush infection. She admitted that she had gone cold turkey on the Fluoxetine two weeks previous because she felt that she was on too much medication.
Now:
My sister's condition has deteriorated into complete physical exhaustion, almost physical shut down. She cannot walk or even move her legs very much, she cannot hold things in her hands and sleeps all the time. Her husband has to work, so she has had to move into my parents' house (they are nearly 70), for nursing for tge forseeable future (Dr said it could be months!!!).
The doctors' (and she has seen loads) opinion:
That my sister's body has gone a bit into temporary shut down due to a combination of withdrawal symptoms from her antidepressants, an extreme grief reaction, her viruses she was suffering from and a history of anxiety.
I understand all the above, but to have such an extreme reaction? She is completely bed bound, can't really move and needs help being lifted to the toilet and eating. She is only 35.
Has anyone got any idea about any of this? Advice, experience, solutions, reassurance? I'm also worried about my parents, who have just had to deal with my Grandma passing (she was up and dowb for three months) and helping my 93 year old Granny who has dementia. I am worried about their exhaustion levels and health. My other sister and I do what we can but she is heavily pregnant and working full time and I work and have three small children.
It's all very strange.
Thanks for reading all this!
How awful for you all Poppy. I don’t have anything helpful to say, but I didn’t want to read and run. It is likely that the doctors are right. How is she emotionally at the moment? What does SHE think is wrong with her?
Worrywart84
18-01-19, 11:56
Really sorry to read this.
This does seem really extreme but the doc’s assessment does seem plausible. Please keep us posted on her condition!
Sorry to hear that, sounds awful, and I can sympathise because I've been through something similar with my dad.
It does sound like a bit like a breakdown, an emotional and physical one. Which isn't suprising given what's happened. You can have functional breakdowns (something I think I'm the middle of) and non functional - like what you describe. Is she talking and communicating with you normally?
My dad had a massive breakdown when I was 16. He had been very stressed with work, not sleeping, very anxious, so his doc prescribed him 3 tablets (anti-d, sleeping pill and like diazepam or something). This was a complete overload on his body, and he became worse. Doctor took him off all the pills after a few weeks, and he went cold turkey. He eventually ended up in pretty much a catatonic state. However he was also delusional - thinking he was in a prison, and thinking that there was a 'robot' version of him living at home instead of himself! He was also hospitalised in a psychiatric ward for nearly 10 months.
That's why I ask how is she communication wise, as my dad was pretty much silent for months.
I don't think your sister is anywhere near the level my dad was, but just an example of how stress, grief, anxiety can take it's toll on your body. I'm a bit of a hypocrit saying all this cos I'm probably going down the same path right now.
I know that sounds quite scary, but I hope it gives you some comfort that it's probably not a physical illness or mystery disease like you think. Just a catalogue of events leading to the mind and body having enough. It will take time for her to recover. Is she back on any meds?
Hi Poppy. I’m sorry to hear about your sister.
I don’t know if it could help, but I’d like to share my story that I think is somewhat similar. So my uncle had always had difficulties walking from a trapped nerve in his neck, however he could still manage just fine. However suddenly his brother passed away and he went into this deep deep sadness, stress and dispair and his issues with his legs went worse tenfold. He almost couldn’t walk and had to get operation. Not only that, some other health issues also showed up after the funeral, making him even more depressed and didn’t want to do much - just staying at home in his room all day.
So I think the doctor was on to something when they said your sister’s condition was a combination of things. It’s good though that she has had tests to check on things.
Hugs.
Thank you so much for your responses
Yes, the doctors have put her back on the Fluoxetine, but at a lower dose. She is communicating, but is often too tired to talk. She's very upset this is happening to her and that my parents are having to nurse her but they, of course, do not mind, she's their daughter. I'm hoping my MIL will babysit my toddler one day next week and I'll offer to look after my sister for the day to let my parents take a break.
All this has really shocked me and my other sister, whose a nurse.
It must be really really hard and it’s wonderful that you are all pulling together as a family. How long has it been going on?
---------- Post added at 14:43 ---------- Previous post was at 14:42 ----------
And Mr L - I think it is very interesting that you acknowledge you are in the middle of a breakdown. I see that as a positive sign!
Just wondered whether any of the doctors your sister has seen have mentioned Functional Neurological Disorder (FND)? My friend's daughter has this and symptoms can be extreme.
If as you suspect your sister is on the autistic spectrum then the bereavement will have affected her very badly and all the other factors coming together at the same time would be a huge mental trauma. I'm so sorry you have this awful worry with her but as jojo rightly says, it just goes to show what a strong and united family you have.
Double_Rainbow
18-01-19, 21:36
Poppy, first, I am very sorry to hear about the struggles your sister has been through. I can say, from personal experience, that going off of antidepressants (esp at a high dose) cold turkey is VERY dangerous. It can produce all sorts of very troubling symptoms, including what you described. This can put the body into a shock state which again may produce what you describe. So that could be one potential explanation.
Second, reading your description of your sister's condition I started thinking that she might be depressed. Depression is not simply being sad and uninterested in life. Depression can produce debilitating lack of energy, to the point of not being able to get out of bed, like you describe. It can produce significant pain, extreme exhaustion, inability to care for oneself. In fact, up to 40% of people who suffer from depression complain primarily of physical symptoms, not psychological. Please look into it. Given that your sister has been through numerous medical investigations and nothing serious was found, depression as a cause for her symptoms seem even more likely.
I hope she feels better! Please keep us posted. Hugs!
MyNameIsTerry
19-01-19, 05:39
Poppy, sorry to hear about your loss and this happening to your sister :hugs:
Cold turkey from a high dose of antidepressants can be a very difficult experience. But even lower dose therapies can produce extreme reactions as some on here who've ended up sectioned will attest too. Some of the side effect profiles alone can demonstrate the rarer extreme responses which I'm sure you are well aware scare a lot of people.
Coupling that with a grief reaction, extreme stress, a compromised immune system, etc and it seems possible.
Anxiety/depression can manifest in such extreme ways. We often understand this with depression we read the sad outcomes in the media but we rarely see this with anxiety. There are some cases of anxiety that have mimicked physical conditions that we wouldn't believe. Some anxiety sufferers have lost the ability to walk or see yet neurological tests prove they can. If that can happen, maybe what your sister is suffering doesn't seem quite so extreme?
Infections can be strange too. Some urinary infections can produce some extreme symptoms, for instance (might be the elderly more though).
But then what you also consider is how this is beyond the realms of anxiety. Any human being can suffer an episode of psychosis which can mean sectioning. We know how extreme psychosis can be but there are many other disorders that seem more extreme than what we are used to seeing in anxiety circles. For instance, those such as the Dissociative Disorders where someone may find themselves catatonic, experience amnesia or find they have symptoms of an apparent neurological disorder (yet they don't). We don't see these types of disorders here but what you sister has been through is obviously traumatic and the doctors may be looking outside into the wider spectrum of extreme stress.
Pulisa has a lot of experience of anything Autism related and I think her opinion needs consideration too. I just wanted to add some stuff I know of about stress reactions in other disorders from reading.
It may be worth considering getting your sister assessed for ASD at some stage? There's such a lot more knowledge out there now, certainly more than when my daughter was diagnosed. I think I remember you saying that you had worked with people with autism, Poppy, so you will be the best judge as to whether your sister would benefit from a late diagnosis.
There was a member on AZ that was so affected by her mental illness that she was bedridden for months. I'm not saying that's totally the case here as there have been some actual physical issues) but severe anxiety can do that to a person.
Positive thoughts
I’m so sorry for your sister, and all of you. She is so fortunate to have you in her corner.
I will say that when my Dad died a few years ago it affected me so much more than I realised. I had months of health problems and anxiety, and I ended up with an illness that is still lingering.
She has had several large shocks and needs to recover and receive the rest and treatment that she’s getting.
Please keep us updated as I’d really like to know when she’s better x
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Guillian Barre Syndrome maybe?
Thanks everyone,
Yes, I have a postgrad in Autism and Learning. I definitely think my sister is at the high functioning end of the ASC scale (the old Aspergers diagnosis).
As far as ASC is concerned, I am not sure if a formal diagnosis would benefit her at this stage as she has already got a dyspraxic diagnosis (there's actually a lot of comorbidity between ASC and dyspraxia)and this might further knock her confidence. She has a lot put in place at her work for her diagnosis (which is most accutely presenting in social dyspraxic elements and organisational issues in her case), which would probably be similar with an ASC diagnosis. A diagnosis would have had much more impact at school, but as you know, ASC girls are much harder to diagnose. People used to think that only/mainly boys could be autistic but recent evidence is that many more girls are ASC but it is harder to spot due to things like social mimicry, less problematic behaviour in the classroom etc. Tony Attwood's book on the subject is excellent.
She is not much better today, although we see small changes. My mum is trying to encourage her to feed herself toast and small things like that. It took my mum two hours to get my sister to the shower and wash her hair yesterday. My mum is only 5 foot 3 and very slightly built and in her mid 60s. My sister is about 3 - 4 stone overweight and virtually immobile. I am so worried my parents are going to do themselves an injury or become ill with the stress themselves. At the moment, they are having to get up four to five times a night to calm my sister down, give her painkillers if she is in pain and massage her feet, legs and hands if they are painful/have gone numb. Does she need to be on blood thinners? My nurse sister (the other sister!) wonders this. My mum and dad are also thinking they are going to have to cancel their holiday they had booked for March.
UK people - what type of help for my sister could my parents get? What would she be eligible for? Surely the state can't expect two people, nearly in their 70s to do all this work on their own. Has anyone got any experience of outside agency help? The problem is, if we knew she was going to recover in a few weeks, that would be something but the Dr said this could be months or years of recovery????!!!
I would recommend ringing a local carers charity in the UK & asking them for help. They could at least point your parents in the right direction with regards to what their rights are x
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---------- Post added at 10:30 ---------- Previous post was at 10:30 ----------
And I mean carers charity not carers agency x
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Does she have a formal diagnosis though? This would help for ticking boxes re outside agency help.
Where is her pain and what painkillers has she been prescribed?
I'm sure your Mum would qualify for a Carer's Assessment.
No, she does not have a formal ASC diagnosis (and parents would probably be very reticent about pursuing this and TBH I'm not sure how useful it would be for her) but does have a formal dyspraxic diagnosis (received in the early 2000s - I'm sure if she was evaluated today, she would receive an ASC diagnosis).
Her pain is mainly in her legs, arms, hands and feet. I'm not sure what type of pain meds she is on, I'll have to ask my parents.
I actually meant a formal diagnosis for her illness although the ASC might "help" in terms of accessing quicker practical help. It's very difficult to get any kind of input from agencies anyway but definitive diagnoses help..
I only mentioned about the painkillers as they can make you very groggy and even more difficult to manage physically. It depends whether they are effective and whether the pain is of a physical or mental source.
It's all very complicated and distressing for you and you need to know what you're dealing with as opposed to struggling through each day in the dark as regards diagnosis and prognosis. I think I'd be pressing the doctors for more information and support for your parents' sake because they must be mentally and physically exhausted and with no end in sight.
---------- Post added at 18:19 ---------- Previous post was at 18:10 ----------
I completely understand why an ASD diagnosis isn't necessary at this stage. It's just another shock for your parents and your sister has obviously coped at work without one up to now.
My daughter is on the high end of the spectrum but with overwhelming anxiety, OCD and depression. It's a complicated, complex and exhausting business and anyone who believes the higher functioning autistics have an easier ride needs a reality check!
tryingtosurvive1
22-01-19, 01:33
to the above poster: Guillaume Barre would have been diagnosed.
descriptively this sounds to me like chronic fatigue/ME, which is a condition that isn't very well understood. Some people think it is mostly psychological while others contest that. It can come after a virus though. whether psychosomatic or not, if she has this your sister may take awhile to recover.
I can't offer any advice regarding the medical side but sounds like she's being well monitored. However, with you mentioning potential ASC I wanted to point out that after meltdown, overload, burnout which she'd be undoubtedly experiencing to some degree after those harsh experiences it's really common for shut down to happen. For some people that's temporary and for others it lasts it depends on the cause, it's a response to stress and being overwhelmed sensory wise. However it causes very real symptoms like insomnia and can be hard for anyone involved. It's important she takes time to process in a comfortable environment. Hope she's back to herself soon.
Just to update people who were kindly concerned about my sister. So much has happened in the last few days. The upshot is, the doctor is going to refer her to be admitted to our city's mental health hospital. She thinks my sister's condition is a deep depression brought on by all the stuff she has been dealing with lately (and the past), withdrawal from her meds, her virus and general extreme anxiety. Her brain has just told her body to shut down basically.
When I went to look after her, it was like she was completely disabled. I had to feed her lunch, tiny spoonfuls at a time, her back and chest were hurting badly she said (probably from lying down so long), I had to bodily pull her up to a slightly raised position to feed her (with her crying out in pain, which was anguishing), but had to be done else she would have choked on her food. When my parent returned, it took all three of us to wash her hair in a bucket because she can't be moved to the bathroom as she is like a dead weight and also is in pain when anyone moves her. The NHS had not offered my mum and dad any training or equipment to deal with a situation like this. My parents were going to pay for a private physio out of their own money as none was forthcoming from services.
After much toing and froing, my sister's GP visited her last night and saw the severity of the situation. The only difficulty is that my sister normally lives in the city and my parents live in the shire, two different authorities. So today, my mum has to register her with the local GP practice, get them to home visit her (they will have received her previous GP recommendations) and then get them to admit her to the mental health hospital in the city.
Hopefully this will be her road to recovery.
I’m pleased this is being taken so seriously. It’s such a sad situation & I wish her a speedy recovery xx
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I think this is great news. Hopefully as an in patient she can get more intensive treatment and a swifter recovery. Good luck to all of you XX
I hope she is admitted to hospital so that she can be assessed on a 24/7 basis and also to give your poor parents a break. Is it a definite that she will be admitted because there may be no beds/she does not meet the criteria for admission etc etc? Hopefully the admin can be sorted out quickly.
It's a really complex situation but your sister needs help and so do you and your family. Please keep us updated and wishing you all the very best xx
I'm really glad to see this update. Your parents can't do this alone.
Hi
Just one question, you said your sister had been taking antibiotics which kind were they? Some form of fluoroquinolones? Something similar happened to me. If you want to you can p.m. me
Update
The GP came out but decided to send her in to the main hospital neurology department instead of the mental health hospital. The consultant there reiterated to my sister and parents that this was an anxiety thing in which the mind has pretty much shut down various functions of her body. He also explained to her that she would get better and that physio was going to be intensely involved. I think the first priority is getting her walking again and being able to use her hands.
After that, psychiatric appointments will follow, teaching her how to manage grief and anxiety better. She is still on the lower dose Fluoxetine and probably on other meds (I didn't ask my parents which).
So for the next while, she will be in hospital. Not much improvement today though, so probably a slow process.
I'm sure it will be a slow process. She could well get an FND diagnosis but she's with the experts in this field now. Good that she'll get the mental health support along with the neuro rehabilitation and physio. How are your parents? They must be relieved that she is in a safe place but it's all naturally really distressing.
MyNameIsTerry
24-01-19, 22:55
It sounds more like Dissociative Disorder which can come from a traumatic experience from what they are saying although with the ASC possibility pulisa might know more about the overlaps.
If so, these disorders are often seen to be short term. It may not be but it seems like a bit of hope to hang onto.
Something else, perhaps, is how these can have overlaps into DP/DR so we can understand a bit about how it may feel?
I hope they get her cared for soon. She needs more advanced care than what we tend to receive. Hopefully there may be some additional family support with a formal diagnosis (and les red tape bureaucracy with signing the right forms for the right catchment area just to make a difficult situation more difficult for a struggling family:wall:)
She may well benefit from a set routine in hospital and having a planned programme for recovery. I hope it all happens as discussed and that there is not a prolonged waiting period for admission.
A new update:
Well, my sister has been in hospital for a few days and has had many tests including a lumbar puncture and sgmhe has a diagnosis. She has Guillan Barre syndrome (sp?). I think Baz, a few pages back suggested this. Luckily, although rare, it is treatable and she will get over it. She will be in hospital for quite a few weeks and will be receiving a lot of care. Also, the consultant said that once you get it, you'll never get it again.
She is still going to get a referral latee on for CBT to manage her anxiety better.
Thanks so much for all your kind words and concern. It was really lovely of you all.
Oh goodness, the poor girl! At least you have a diagnosis now and a positive prognosis. Thank goodness she went to the neuro department and not the mental health hospital, She will get the expert care she needs now and every day is a day towards recovery.
Please keep us posted and look after yourself, Poppy. You must all be mentally and physically exhausted xx
Great to have a diagnosis, and you can all look forward to her recovery x
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