How can I help my sister?

[Parliament-73]

Hi everyone. I am new to the site, and I am also desperate for any information that can help my 81 year old sister, Trish. Trish "developed" Fibromyalgia some 5 years or so ago, and since then, her pain has increased so much, she has thought about ending her life several times. Her whole body is in constant, unbearable pain. She had her covid vaccine last week, which sent her symptomes into overload. Her migraine like headache was not helped, even with specific meds. Every part of her body is in constant, unrelenting pain. I watched my dearest eldest son, go from a rugby playing, fit young father, into a bed-bound, fatigued shell.

I watched my son die at 50 years old. I lost my elder brother last year, during the first lock down. I can't bear the thought of losing my sister too, to this insidious disease. I know there is no cure for Fibro (ME), but I am begging anyone who could help me, help my sister in some way. Any medication burns her gut. She is on morphine now, but the pain is uncontrollable. Can anyone give me some help, some information, anything, please?

Hils

[JayCeon]

Hi there! That's a tough one - there is so much to do, try, read, here and elsewhere... If the pain is uncontrollable anyway, then I wdn't take morphine, but then no meds helped me, only harmed. Migraine-like headache does not look as if it were only FMS & ME. The docs can't help? What about changing docs? After all I've experienced (65 treatment-types) I always suggest trying various types of gentle physical therapy, esp. osteopathy.

[Parliament-73 in reply to JayCeon]

Thank you for your help

[penny]

I’m really sorry to hear this. Have they had thyroid and full vitamin tests done, that includes your son? If so, are you able to post the results on this site for comment? Vitamin D is used by a doctor in Brazil to treat fibromyalgia but I cannot say if this is an officially recognised treatment.

Good luck.

[Parliament-73 in reply to penny]

Hi Unfortunately, my son died 4 years ago, but I do know he didn't have any treatments for thyroid problems. He did have 5 tumours from his carotid artery, a tumour in his brain, and diagnosed ME, plus other associated problems. Bless him, he used to be an rugby player before he got ill. My sister has had various blood tests and nothing has shown re her thyroid. She cannot tolerate any meds really. Everything seems to attack her stomach and gut.

[penny in reply to Parliament-73]

Hi Parliament-73, I’m sorry to hear that and send my condolences, albeit late ones.

As to your sister, if you do have access to the actual results for thyroid blood tests this would assist this community in helping. Often a GP will say that blood test results for thyroid hormones are ‘all normal’ when in fact they are not as there isn’t really a ‘normal’; they mean ‘in range’. As many here have learnt to their detriment being told that thyroid hormones are ‘in range’ and being told to go away is not good and means that doctors miss a simple diagnosis.

Best wishes and good luck.

[Parliament-73 in reply to penny]

Hi. Thank you for your reply. As I live 140 miles away from my sister, I have to rely on what my sister tells me. I will pass on what you have mentioned about her thyroid test.Best wishes Hils

[Robto]

Hiya, this is my third attempt at writing this post, it keeps throwing out of this site (not sure if the problem was me or the website- probably me!) hopefully it will you reach this time. I've been told by my gp and the pain clinic (there should be one near you-just ask your gp for a referral) that I have to come off the Morphine because it was causing my pain and it should only be used short term.I am also on Gabapentin, Co-drydamol and Amitriptyline all of which helps, but unfortunately nothing you take will stop your pain altogether.

The are alternatives to these medications because what's good for one may not be great for you.

I am wearing myself off the Morphine as per their instructions, I'm now down from 180mg a day to 20mg a day, but I'm now in worse pain than ever. So in desperation, and after reading lots of posts on subject on this, I'm trying CBT oil and while still not stopping my pain has made my life more bearable, it helps with anxiety too. I hope this post will give you some thoughts and possible alternatives to try.

Wishing you and your sister all the best.

Please take care, keep well, stay safe.

Rob. X

[Parliament-73 in reply to Robto]

Bless you, thanks

[aud01]

I really don’t know what to say in a reply to your sister feeling like ending her life. I was recently sent to the mental health crisis team as I can’t stand the pain or the life I have lived for 10 years or slightly less. I’m glad to say I’ve had some more help, but some days I don’t think it matters what pain tablets you take none take the pain away completely.

I wish her well And hope this helped xx

[Parliament-73 in reply to aud01]

Thank you

[LoneEra]

My heart goes out to you, but the first thing to do is not panic! There are definitely things that can be done to help your sister.

Speaking to the doctor is a no-brainer. They need to understand her situation and respond - they can give stomach soothing drugs with any other painkillers to help her. Be pushy. Don’t take no for an answer.

- Gentle stretches. I can’t over emphasise how important this is. Your sister needs to keep moving in order to beat the pain. Google “gentle stretches for fibromyalgia” and lots of videos will come up.

- a TENS machine. These work well for some people to help reduce the pain. They are cheap on Amazon these days.

- Hobbies. Distraction from pain is vital. Sitting around thinking about how much pain you are in can lead to very negative thoughts, as your sister has experienced. I know she probably has very little energy but even listening to a song she likes can boost positive brain chemicals. Things like jigsaw puzzles can also be a good distraction.

- Eat fruit and veg and drink water. This seems obvious but clean eating and staying hydrated is massively important.

Sorry there is no magic bullet, but the situation can definitely be better than it is.

Your sister may also find that this forum helps her to feel more understood and less hopeless.

[Parliament-73 in reply to LoneEra]

Thank you for your kind help