Fibromyalgia Action UK
40,655 members52,715 posts

So sad

Hi I'm Sarah. I'm a single mum to two disabled children. My daughter has muscular dystrophy and needs lots of medical personnel care. My son is autistic and hates change in routine. My health has slowly been getting worse over the last few years that now my mother has moved it to help look after the children. She has been her since Christmas and with out her I'm convinced I would of lost my beautiful children. My mum and dad have lived apart so that she can support me. I suffer with depression and have done so for over 15 years. Right now I'm in such a dark place that I'm convinced the world would be better off with out me being a burdon. I keep seeing my doctors and tell them how very desperate I am. They keep saying go away and lose weight. Don't get me wrong I know my weight is one of my biggest problems but if I'm mostly bed bound due to the excruciating pain I'm not going to lose weight by not moving.

I can't get the Drs to understand how very desperate I am. X

10 Replies
oldestnewest

I'm so sorry Sarah. I don't have any words of wisdom, but couldn't read this and not reply.

I too have an autistic son,and suffer from terrible mental health problems.

The crisis team are an avenue you could explore,since your GP seems to not recognise how ill you are.

Thinking of you,and never give up xxx,

4 likes
Reply

I'm frightened of going to crisis team x

Reply

Please don't be frightened. They are there for you, and will support you.

I have used them, and just knowing someone who has my notes is at the end of the phone, is very reassuring when feeling dangerously low xxx

Reply

I feel for you we get a lot of people coming to this Fibromygia foram for advise and help So many sad stories I hope things improve for you and in order for that to happen you will have to be a fighter as it seems you got a lot of differculty May be you need to try to get some home help Imean we are all in pian on this foriam but you seem to have the world on you shoulders , I really prey you get some piece of mind some how xxx

5 likes
Reply

Hello sarah-1982

I am so sorry your health is suffering so much and that you have 2 disabled children to look after.

Your mum sounds truly amazing.

Have you thought about taking your mum with you to your GP appointment? That may help.

If you really do think that you may harm yourself please go to A&E or ring your surgery and tell them how you are feeling. I promise you that they will take you seriously.

I have given you the number of the Samaritans just in case you need someone to talk to:

The Samaritans UK

Telephone: 116 123 (UK)

Would you mind me asking you if you take Pregabalin for your pain? That could be contributing to your low mood. If you are taking it, please don't just suddenly stop taking it as that can then produce horrible withdrawal symptoms.

I do completely understand how much pain you are in. I am taking a lot of very strong pain meds but yet I am still in an awful lot of pain all the time.

Getting up and moving around everyday is very important. I do know how painful it is, but if you don't get your muscles moving they will stiffen up and it just becomes a viscous circle. Even if you get up, move around for a bit, have a cup of tea etc and then go back to bed that will help.

Some gentle stretching will also help. Yes, it is painful but I promise you that it will help.

Please let us know how you are doing.

Wishing you less pain and more peace

Lu xx

PS Have you ever used MIND the mental health charity? I can personally recommend them. They can help with depression and anxiety.

Here is their website address:

mind.org.uk

4 likes
Reply

Hi sarah-1982

I really am so genuinely osrry to read this my friend, and my heart truly goes out to you. Quite often I suggest to members that they visit their local walk-in centre and see a doctor there as they may find some better treatment and a more sympathetic doctor?

I can see that your other respondents have given you some absolutely wonderful replies as well. I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

Reply

I am so sorry to hear of your desperate situation. If your GP is not listening maybe you should

a) complain to the practice manager, in writing is best, and then

b) change your GP.

Have you tried talking therapies? I believe you can self refer and they can give counselling over the phone.

I wonder if the lightening Process would help. It can help with pain fatigue and depression. My daughter has done this and has made dramatic improvement. Not cured but certainly loads better! See a previous post of mine pasted below.

It works on the principle that brain pathways can be changed. It uses techniques similar to NLP, mindfulness, hypnosis ( but you are not at any time actually hypnotised). In essence it is quite simple to learn the technique but the training covers a lot of theory, much of which is similar to what they teach you in pain management.

The course was 11 hrs in total over 3 consecutive days. I wondered if my daughter would even cope with focusing for 4 hours at a time as after 3 hours of being out of bed she is normally climbing the walls with pain and exhausted.

After day one there was already significant progress. She walked the dog for 15 minutes with no ill effects. She has not walked the dog for about 2 years and walking more than 5 minutes normally causes increased leg pain which can last days or weeks afterwards. She only had a short nap and did some work on her lap top with no,ill effects.

The progress continued after days 2 and 3. She is needing less sleep, is reducing her reliance on heat pads, and we have reduced the length of massage I give her. Now 2 weeks on she is still doing really well. We have just come back from a 3 day theatre fest, travelling to London on the train, seeing 3 shows, doing lots of walking, including spending 3 hrs walking round shops with just a couple of breaks! Today she has had some additional pain in one of her legs, but probably no more than you would expect from having not walked for more than 5 minutes for at least a year!

She is reducing down her medication gradually. She is not pain free yet but we are hopeful that this will happen over time, but even if it doesn't her quality of life is so much better. She can now start to think about her career and is no longer facing a life on benefits.

I cannot tell you what a relief this is for us as a family. If you are able to afford it, I would strongly recommend trying this. No doubt it does not work for everyone and it will not cure structural damage but I still believe it can help with managing pain caused by arthritis etc. if your life is dominated by pain it has to be worth trying. If you cannot afford the course (it is expensive) there are several books available. The one Abby's trainer recommended was "Get the life you love now" by Phil Parker. It is better to do the course, but the book covers everything in the course and is inexpensive.

1 like
Reply

Also, some tips for pain. If you find heat helps, Electric heat pads and Linnex which is available on internet. It seems expensive but lasts ages as you only need a tiny amount. And I do mean a tiny amount, start with one small dab, give it 10 minutes try a little more. Use too much and you will feel like you are on fire! However I find it amazing and have recommended to several friends who have also found it great.

Also massage, osteopath or chiropractor can help.

Gentle stretches. Have you seen a physio? They can give you suitable exercises and stretches. If needed you can do bed exercises.

Good luck!

1 like
Reply

Thankyou to everyone who left a message. Certainly don't feel so alone. Xx

1 like
Reply

Good luck sarah-1982 my friend.

Reply

You may also like...