Help, just been to GP and suspects I have Fibromyalgia.

[tgm1969]

I went with concerns about aches and pains in my legs, feet, back and body in general. I always struggle at this time if year anyway but this year it has been far worse. I don't get much sleep and can't seem to 'switch off' despite being absolutely shattered all the time. I've been told to research it and try to make some lifestyle changes and make time for myself. This is difficult as I'm a full-time carer for my boys who both have additional needs. Everything I do revolves around them, meetings, hospital appointments, fighting for healthcare for them and education. I feel isolated with no real friends anymore. I had to give up work 5 years ago. I'm only good at talking with other SEN parents. Any social outings are as a family or with activities the boys do. They are not good with change. Does anyone have any suggestions please? GP offered antidepressants but I have declined at the moment, I need to be able to function as on 'standby ' all the time.

[Lewan1980]

Hi the gp thinks I have fibromyalgia aswell and like you I have a child on the autistic spectrum who does not sleep. I’ve had to fight for my sons school to listen to me and it’s took me 2 years for them to finally take my concerns seriously as I went in with sendiass. If you are not keen on antidepressants then maybe try to control the pain side of it. I had to stop working a few years back to due to my depression and pain. Are your children in school?

[desquinn Partner Volunteer FMAUK Trustee]

please do not just dismiss antidepressants as there are a few that are given for pain rather than depression. Amitriptyline for example or duloxetine.

[Hidden in reply to desquinn]

Yes, I have duloxetine and have had no side effects. Love and hugs Lynne xxxx

[Hidden in reply to desquinn]

Yes, I’ve been given Fluoxetine, it’s meant to relax the muscles, which in turn should help ease the pains.

[Cathjamesandmatt20]

Hello. I read this and it was like reading my life. I too have just been told they think it’s fibro but reluctant to say for sure until I’ve seen my neurologist next month.

I too have 2 sons with additional needs. Eldest now 21 is more severe, other is 18 and suffers with the major depression side of his autism. I’ve struggled alone for all these years and started to get poorly around 8 years ago. Thankfully I wasn’t too bad and I’m just now thankful they are grown ups as they have to help me a little now. Which as you can guess is not often worn how they can be.

I had an accident summer 18 and was bed bound for 8 months. I lost friends, my partner, and dismissed by specialists blaming my mental health for me not being able to walk or drive etc. I’m so very isolated and I know how much it affects you. I’ve become isolated in my house and don’t see anyone. Mostly doctors and hospitals! If you want to chat just give me a shout. People need people it’s quite simple really. I hope you get definitive answers soon. Take care.

Cath x

[Gooddaysagain in reply to Cathjamesandmatt20]

Dear Cath, I feel so sad for you that you have been made so isolated by your condition. Like you, I feel isolated by my friends' judgement when I say I can't go out in the evening because the pain is so much worse when I get too tired. Everything is a decision between pain and doing what I want.

I was 'locked' by pain and cold into my bedroom when I lived in an old farmhouse in the Welsh hills. Lovely, but.... I've moved home in order to feel better, but miss my hills. As I'm no longer cold and am on the correct meds, I feel much better these days. I have my brain back and sometimes find myself smiling, despite the SAD time of year.

Think of yourself as someone enjoying solitude rather than suffering from isolation, and enjoy the time you can take for yourself.

I sprinkle aromatherapy oil onto my pillow, to turn my necessary 'horizontal' time into a treat. Find out what makes you feel cherished, and dive deep into it (hint: it's much easier to enjoy a moisturising face mask when you're not going to be disturbed!)

And, please share any little victories you have with the rest of us.

Thank you for being there and caring!

Hugs, dx

[Cathjamesandmatt20 in reply to Gooddaysagain]

Aw thank you for your kind words! It’s been 17 months and counting. I sent My mobility car back in December because what was the point in it being there wasting money? I clung on to it as it was my last element of my independence. It was so tough but I had to do it.

I have such bad neck pain and issues with it, as well as my lower spine. So I can’t even go for a little walk. I’ve not had anyone who can take me out in my chair or for a drive. So it’s extremely isolating. To the point where I feel almost agoraphobic 😔

I’ve been messed about, let down, dismissed and faced a lot of losses.

Half my gorgeous long hair fell out after a med side effect, I gained about 4 stone being both inactive and comfort eating. I can’t drink.

Sorry to moan but sometimes we need to let it all out. I was bed bound for the first 8 months with care at home. So I’m not anymore so that is an achievement 😊

I am doing my best to keep upbeat and positive but the wobbles I have are more frequent now. I was due to see someone last week but when I got there it had been cancelled. So another month waiting. That’s the worst isn’t it. But I will get some answers and finally get the help I need. It’s likely I do have fibro brought on by the accident and stress as my partner left me the day I got out of hospital, but alongside other health conditions. I just hope I can get some of my life back this year 🙏🏻🙏🏻

Thanks for reading x

[Gooddaysagain in reply to Cathjamesandmatt20]

I'm laughing ironically here, because my poor car keeps going flat. I moved 2 years ago to somewhere warmer and closer to a town than the beautiful hills of Wales where I suffered from the cold. The town is only a mile away, but if I go in I can't move the next day because my neck, lower back, legs and hands hurt so much from driving! Constantly "learning from the absence of", I'm selling and moving again to a place which has taxis!!!! Then, my lovely Yeti can go to a new home, where she'll get the exercise she needs.

Friends think I'm mad to move yet again, as it takes so much out of me, but I need to live in my landscape as - like you - I can't travel or walk far. Luckily, they're gathering around to help me sell and move.

I don't have many friends left, but those I do know how important they are to me and I cherish them!

Friends who fell away, hurt me at the time. I also got the courage to say goodbye to one or two who caused me too much painful stress. I hope you have some good friends remaining close by, and who understand, or - at least - try to.

I'm SO sorry your partner left. That was mean of him. Have you tried a hot water bottle?!!!!????

Hugs, dx

[Cathjamesandmatt20 in reply to Gooddaysagain]

Yeah I suffer more when it’s cold. Roll on the warmer weather! I’d love to move to Spain but they wouldn’t look after me financially there so 🤷🏻‍♀️ It killed me driving too yeah. I am almost used to not doing it anymore even if I had a car and was a little better where the hell would I go 😂 can’t walk more than a few feet, can’t sit for long of foot goes numb due to spinal issues, I have one friend but she’s not too well as she has lupus. My best friend ditched me last year. And yeah my fella left me the day I got out of hospital after my accident. Was in for two weeks. He didn’t even say anything just vanished. I lost my cat of 7 years, my auntie, I guess the accident plus all that brought it on. Also sorry if I repeat myself but my short term memory is shot to bits 🙈 I’ve never joined a support group before but I think this is a good thing for me now. You don’t feel so alone in it all x

[Gooddaysagain]

I'd second the advice about Duloxetine. Despite some side-effects for the first 3 weeks, one 60mg tablet a night has given me my life back.

Since taking it, I have managed to come off pre-gablins and opioids of ever-increasing strength and have a clear head for the first time in 10 years.

Have a look at your diet too. There are some good websites that pull together research that has been done into the specific needs of people with Fibromyalgia, Chronic Pain and Chronic Fatigue.

The 2 that I found most useful are Dr Sarah Brewer and Dr Sarah Myhill, who give diet and other information. Dr St Amand and Dr Teitelbaum also have useful insights but limit their recommendations to their research results and quite intense protocols.

All 4 are after your money, so pick and choose what works for you, getting advice and support from your local Pharmacists.

I felt a lot better taking Magnesium, Vit D3, Vit B1 and B12, D-Ribose and a broad spectrum Amino Acid. I also gave up gluten and reduced my carb intake overall (all 4 Drs seem to agree that people with FM and CFS have difficulty metabolising carbohydrates). It might also help to take a good pre- and pro-biotic to improve your gut health, especially if you're taking more meds.

I wish I could give you a 28-hour day, so you could use the 'free' 4 hours to get the rest you need. All I can say is, remember you are not alone, and wish you well.

Gentle, healing hugs, dx

[Laylamurphy]

You have given me hope. I suffer from Fibromyalgia I've been v stressed over lockdown and suffer from osteoarthritis and muscle weakness I'm v overweight and Feel that gluten free and lowering of carbs might help I also feel I might go on the Duloxetine I was offered an antidepressant at the time my rheumatologist diagnosed me and I really just refused as I wasnt depressed and didn't fully understand the help with pain etc it had. I suppose I was in denial for years and really in the past year I've just been putting it on the long finger. I feel I'm having a flare up during these stressful times and I must reach out for help before It overwhelms me Your writings have helped me decide I am so grateful Thanks