Introducing myself

[Kestrelflyer]

Hi, this is my first time on this site. I came across it on Facebook, as I'm sure many others did.

It's taken almost 2 years to get my diagnosis of Fibromyalgia! My GP has been pretty rubbish, and just wanted to mask my symptoms with pain killers and anti-inflammatory tablets. Just by chance, I saw a different GP one day, who asked why I'd never been sent to a Rhuematoligist. He made me a referral which came through quickly, and within 15 minutes, I had my diagnosis. It was a relief to finally know what was causing all my symptoms, but frustrating to learn that there's no cure!

Since I saw the Rhuematoligist in November 2011, I've had appointments at the pain clinic cancelled several times on me and no other follow-up treatments of any kind. I've had to go to the hospital myself to chase up the pain clinic and the physiotherapy dept. It looks like I may get into both within the month, but not without me having to take matters into my own hands, and my GP refuses to take any further action until I've seen both departments, and the pain clinic have already said that I'm on the wrong medications!

I'm also having to fight for DLA, as they don't seem to take FM seriously and don't believe that on some days I can barely do anything for myself. Even with the help of the CAB, I am still having to take my case to a tribunal.

As I'm sure everyone else with FM does, I have good days and bad. I've been told that exercise is a good thing to do, but when I have a physically active day, it sets me back several days to recover and I can barely make it out of bed I've at least got past the depression side of things since getting my diagnosis but still have days when I feel completely useless and pathetic.

My Sister-in-law has terminal cancer and is already past the time the doctors gave her 3 weeks ago. While the whole thing is extremely emotional and stressful for the whole family, for myself and my husband there is the added stress that we will become her 11 yr old autistic sons legal guardians when she passes away. We are the only family members who can take him on, and no-one would see him go into the foster system when we have such a tight-knit family. However, I do worry that I'm not going to be able to cope on my bad days, especially when he's not at school. After seeing his Mum suffer in pain, I don't want him to see me suffering and think the worst.

He has been to us several times to stay for short periods of time to get used to the house and how we do things, but he's never really seen me on a particularly bad day. He does know that sometimes I get tired and have some pain. I just worry that it will all work out.

As much as I suffer with pain in my neck, shoulders, shoulder blades, left arm, left hand (especially my thumb), lower back and occasionally my legs, and of course the horrendous headaches that last for days, my worst problem is the tiredness. My sleep is always disturbed, both night and when I go back to bed during the day, and no matter how long I spend trying to rest, I always feel like I'm struggling to stay awake. My concentration and memory are definitely not what they used to be, which may be due to lack of deep sleep or the medications I'm on, but it makes life hard and frustrating at times.

I am sure many of you suffer the same symptoms, pains and frustrations that I do, and it's great to find a site where others can relate to what I'm going through. Friends and family show support and sympathy, but they just don't get it! I feel sure at times they think I'm just being a lazy cow!!

I hope and look forward to making some new friends here and offering support and sharing experiences with you.

[Hidden]

Hi kestrel,

I've typed so much today that my fingers are getting stiff but just wanted to say I bought up my autistic son practically alone whilst coping with Fibro and if I can be of any help let me know.

Helen

[dawny]

so sorry to hear about your situation, such a hard time for yourself and your family, as christine says take each day as it comes and i wish you all the best x

[Kestrelflyer]

Hi ChristineEls, HelenUK1963 and dawny. Thanks so much for your support and helpful comments.

Christine, my nephew can do some things around the house, but we usually have to re-do them as he's not too good at stuff, but bless him for trying which is more than some children do! You're right that I shouldn't worry about things just yet, but it's hard not to sometimes. On Friday, Leah gave me a card for my 40th birthday on Monday. Inside she wrote "thanks for loving my boy" and also said to have a good birthday and she hoped she would still be here for Monday. With all that emotion, being tired and in pain, I was full of emotions when i came home and walked into a surprise birthday party for me! As much as I love my husband and friends who organised it, it wasn't really the right time for me but I couldn't let on to anyone.

Helen, thanks for sharing with me, and if you're up to it, I'm sure they'll be times when I'll want to pick your brains! Thank you.

Dawny, thanks for your supportive message and wishes.

[Kestrelflyer]

Christine, thanks again for your comments, and for your earlier link to DLA info.

My nephew does talk about his Mum and does understand that she isn't going to get better. He prefers to use the term "passing away" when speaking of what will eventually happen. He does have his emotional moments, but although they can be very intense, they are over with very quickly. We've been told that he may go either way and be extremely distraught for a long time, or will not register any emotion at all, but I think a flash emotional outburst is most likely.

As for my birthday, it has served to remind me of what great and supportive friends I have around me and can count on. Anyway, I certainly don't feel 40, at least not on my 'good' days! lol

[Louise09]

Hi Kestrel,

My step daughter has Aspergers - its on the same spectrum of the Social Communication Disorders.

I find that when I am in pain she is actually quite "loving". It gives her a purpose, help with the housework, help make tea, set the table etc all on her own. She kind of mothers everyone and she loves it, she can control us. Its hard at times but she tries. What she finds hard is when I am well she wont let me be independent. The bonus is she loves doing the shopping and because of her condition she packs the bags brilliantly, no heavy potatoes or milk to crush the bread, all tins together etc etc.

Her mum also passed away in 2006 when she was 9. She got all the bereavement counselling and still has regular meetings and is 16 now. We just have to get over the "I want a baby" thing! Luckily my other daughter (20) looks after her godson who is 7 weeks old and he cries and poo's and she doesn't like that. Unfortunately TV has a huge impact on people with a SCD and all the baby programmes idealise babies and young mums. Any way I digress!!!

You are going through hell and I can understand and if you need to let off some steam or need a shoulder I'll listen and I am sure you'll get all the support you need from this site.

Keep your chin up.

Lxxx

[barrowmansbabe]

If the DLA are'nt taking it seriously go to the media.

[barrowmansbabe]

First off let me say how sorry I am about your sister inlaw. I do'nt know how you're gonna cope with her Autistic son, I have a six year old Niece and I find it hard looking after her and she has nothing wrong with her. I had been attending Physio and she put me on 1 of those gym balls and because I had no support for my back and sides I suffered the whole night because the Fibro affects my ribs so I had to sleep in the spare room so that I would'nt keep my partner awake with my tossing and turning all night. Well I shall say a wee prayer for your Sister inlaw and hope you get the support you need for looking after your Nephew, God Bless.

[Hidden]

Hello and welcome Kestrelflyer! I am so sorry to hear about your sister-n-law, that's so sad. I agree with other comments that somehow you will find the strength to take care of her special son. I think we all can think of occasions having Fibro when we really didn't think we could cope and yet we did. I am sure you will have the support of your husband. You are bound to be fearful as to how you will manage looking after him, it is one heck of as responsibility.

The best thing you can do is to take literally one step, one day at a time. Don't look ahead and you will be surprised at how you will manage. You will do it for her son, your nephew, because he needs you.

Read up all you can and learn about Autism, so you fully understand his condition. That way you will be fully prepared for the task and responsibility ahead.

You are doing a wonderful thing, you are to be admired! Take care.