Log in
LUPUS UK
22,369 members17,760 posts

Despair

Hi my Mum has had Lupus for many years and wasn’t really diagnosed until about 15 years ago. She is know bedridden cannot do anything herself and is in severe pain. So much so that she tried to take her life last June. She has been to several pain clinics to which help her for a very short period her doctors are good but I beat myself up as I cannot do much for her as I live about 2 hours away. Conversations over the phone can be difficult as well as I try to talk about things other than her condition. She is due to go to the pain clinic again on the 18th but I have now got to the stage of thinking is it worth it I obviously dont say this to her.

My Dad is 83 and does everything for her he won’t have help. I’m sorry for sounding sorry for myself but it doesn’t matter whether I suggest things to my mum and dad or if I call her doctor I just seem to be going round in circles.

23 Replies
oldestnewest

It must be etremely frustrating for you and that’s obviously an understatement.

I can only offer my personal experiences for some kind of insight - please take them or leave them and apologies if you’ve tried all of this already.

I was wondering if it would be better if the pain clinic would take your mother on for much longer as it sounds as if short term measures aren’t helping and something more sustainable is required?

My mother in law has been in a lot of pain for years due to PAD and PMR. My husband finds it very hard to distract her from moaning about her health over the phone. So I explained to him that I’ve found most people try to change the subject if I ever touch on pain too. But actually this just makes it a more lonely experience? That’s why I come here so much - because people do understand and I don’t need to burden my family.

And I do completely understand that you try to distract by talking about other things to your mother. But, as I have tried to explain to my husband, if we can describe pain in a way that those we care about, really comprehend and believe - then the pain can actually dissipate a little - or be easier to manage at least. The trouble is that pain isolates us from others because it’s invisible and we feel like cowardly and like failures for not being able to bear it somehow?

Counterintuitive as this may seem, if we can speak about it properly in a way that at least shares some of the load then it can help us manage it better, rather like sharing a the pain of a bereavement. For example I told my husband the other day “when you say your finger hurts like mad just now due to burning it on the cooker earlier - well this is how my legs, arms and mouth feel 24/7- as if they have been scalded” - and he then told me that this was the first time he had ever truly grasped how awful it must be to live with this invisible pain. It has helped him to be kinder to me when I wake in pain during the night - which in turn means I’m less inclined to talk about it or can just say “scalding today” and he knows and can be more sympathetic - which helps.

Not that we wish to be health bores but pain can be so dominating that it does seem to help with our overall sense of well-being when our loved ones “get it”. Perhaps this is why your mother comes away from pain clinic feeling short term relief for having been able to share and be understood? And then the inevitable loneliness that chronic pain causes just returns.

So, if these options haven’t yet been exhausted then perhaps CBT or art therapy or joining a local Lupus UK group - or all of these- might be the longer term answer for your mother’s well-being/ mental health?

5 likes
Reply

Hi thanks for taking the time to read and reply never done anything like this before, my Mum has a counsellor and physiotherapist come to see her fortnightly but she generally is in too much pain to interact, the pain clinic has suggested that she go to some class there but it takes to much for her to get up and travel. Also it generally takes a few months to get an appointment at the pain clinic she managed to get seen a bit earlier due to the fact that she tried to take her life.

I keep hoping that something will come up but they seem to be under the impression there is not a lot they can do for her.

Reply

Well intractable pain is pretty horrendous and they do need to help hers I’m glad they are trying. But I still maintain that being able to share with fellow sufferers helps well-being most so could she come here perhaps - has she got an iPad or other technology? There are mindfulness CDs etc that some find really useful but guessing that counsellor has covered this. Could improved technology and forums be the answer? This community is pretty wonderful and supportive and even just reading posts from others with Lupus and related conditions help. X

3 likes
Reply

Unfortunately she has very little sight now as well which obviously doesn’t help the situation the only thing she can do with the iPad is listen to books which is the only thing that keeps her going.

She has never mentioned that they have suggested CDs, to be quite honest with you this where I struggle as she doesn’t think anything like that or the

Counselling helps her pain.

Reply

Oh dear I’m sorry. I’m not sure what’s available for the visually impaired with Lupus in the UK but perhaps others will have suggestions.

Does she like the radio? I listen to radio plays and soaps a lot to take my mind off health problems - especially detective dramas. Pain clinics tend to focus on drugs in my experience whereas it always helps me more to be able to talk about pain with fellow sufferers so I feel less alone.

Perhaps there is some kind of phone group for Lupus UK or there would be someone who might be keen to pair up with your mum by phone?

Are you a member of Lupus UK yet because it might be good to write to Paul Howard, the admin here and deputy CEO, and discuss possible options? He can be contacted via this HealthUnlocked too.

Others will hopefully respond to your post tomorrow with some more practical suggestions.

2 likes
Reply

Thank you so much for your time advise I may very well contact him. I really appreciate your time I just want to make my Mums life abit more bearable and my Dads a bit easier. Xx

2 likes
Reply

You’re very welcome and I really do understand. Hope you can access some good support for your parents very soon. Twitchy x

2 likes
Reply

Hi Kp55

I am on an array of pain killers and have had loads in the 20 years I’ve had SLE and Fibromyalgia. I am currently on 40mg of OxyContin, 20mg of Oxycodone and 150mg of Prcegablin a day. These drugs do help immensely BUT they are totally addictive, now I don’t know if that would matter to your mother as anything to get rid of the pain is worth all the tea in China (trust me I know) but I have recently tried to reduce these painkillers as I have been using HEMP oil or CANNABIS without the HIGH ingredient in (I think it’s called THD) I have used the vape, the cream and the drops and can honestly say they really really do work. All these items can be bought at any health shop and are not illegal. I just think that your mothers condition sounds so terrible that anything (obviously within reason) is worth a try.

Good luck, good health and keep strong,

Wolf_1 🐺🦋😴💤

3 likes
Reply

Hi I have considered your suggestion of cannabis before but not been to sure how to go about getting it I will definitely try and get the hemp oil.

Thanks for the suggestions and I will let you know how I get on

1 like
Reply

Amazon sell cannabis capsules and hemp oil. I use it and find it helpful.

Reply

Thanks worth a try

Reply

Hi mom...it is very true but in my country we get it fresh off the tree which means we boil the root and drink it... it cure Asthma..nerves problem u sleep good at night and wake up very strong...and the maringa leave is very good for inflammation in the bone my sister is lupus sle and i make tea for her with it..

Reply

Hi Kp55

I’m sure after trying the hemp oil in any form you will see good results. If you decide to buy it off the internet please check the strength of it as your mother may only need a small amount to help, then gradually over time use stronger items as the body gets used to the “drug” It comes in all manner of pleasant flavours. I prefer the drops behind the tongue as I’m a non smoker (although they say that vaping does not harm you) and the cream is just as effective, especially if someone else is massaging it on for you!

Good Health, Good Luck,

Wolf_1 🐺🦋😴💤

Reply

Hi thanks I was also going to check with her Doctor but your advise has been really helpful

Reply

Hi,

Is your mum on treatment for her Lupus? Uncontrolled disease can be very painful, the first place to start is optimum treatment of the underlying disease.

It sounds like she needs some physiotherapy as being in bed can compound the problem.

Reply

Hi yes my Mum is on a very large cocktail of medication. It obviously helps but I think her body is so use to it know. This is why I am looking for any ideas to help. She does have some physio but usually leaves her in more pain, but she is trying to keep doing it. Anything physical is a very big effort and totally takes it out of her.

Reply

You say a large cocktail of medicine but is that immunosuppressants for Lupus or painkillers etc?

Sometimes polypharmacy can be part of the problem, is your mum under a Lupus expert?

Reply

She has both morphine is the only thing that keeps the pain away for short bursts. The only consultant she sees that I am aware of is the rheumatologist and the pain clinic and they say there is not a lot they can do for her.

Reply

You don't say how old your mum is. There is no good evidence for opiates in chronic pain, it can also lead to hyperanalgesia and other problems.

I hope I am not sounding unsympathetic but sometimes a fresh pair of eyes to have a look at the problems are needed. Has your mum been offered psychological support as chronic pain needs dealt with from an emotional point of view as well, there is no doubt that depression makes it worse.

Reply

Hi Mum is 76 she has someone come in to talk to her but I think he talks about himself more than her that could be my mums fault as she has always been the one that try’s to help others

Reply

It just seems that everyone is stuck in a rut here. Have they ever given your mum an explanationfor her pain?

Being in bed most of the time will be making things worse as well as putting your mum at risk of pressure sores, chest infections, clots, muscle wastage etc.

It does sound like there is a lack of a co ordinated multi disciplinary approach to your mum's situation.

Do you think she is motivated to try and change things?

1 like
Reply

I believe the worst of her pain is rheumatism. She tries her hardest to do exercises but even though they are very light exercises it always seems to put her back. It’s very difficult for me to motivate her as I’m quite a distance away from her I tried talking to her doctor once before but to be honest I lost it with her. My mum gets on really well with her and she checks up on her fairly regularly so I can’t complain.

Reply

mum had an appointment with the pain clinic booked for the 18/1 only to be cancelled the day before so she had come of all her meds as she needed to have an injection for the X-ray she would be having. To cut along story short she was very upset to say the least, she then had a fall two days later and is now in hospital only to be told there is nothing more they can do for her. So I have bought some CBD and hope this may give her a bit of her life back. Really scared that she may try to take her life again.

Reply

You may also like...