Newly diagnosed

[Lillieziggie]

Feel like I've been given diagnosis put on waiting lists and then left to get on with it, bad couple of weeks, it's hard to know whether depression is creeping in, my life's changed so much had to give up work, lockdown not helped. I have found that a full body pillow has helped so much.

[LoneEra]

Hi Lillie ☀️ This sounds familiar, unfortunately. The NHS is under so much pressure (it already was before Covid) that waiting lists are incredibly long. Is it a rheumatologist that you’re waiting to see?

Your GP should be able to be a bit more helpful in the meantime, though. Have they given you any medications at all? Referred you for physiotherapy?

Are you aware of the things you can try to reduce the pain/fatigue at home already, or would you like some tips?

Sorry for all the questions but I’ll be able to give some more targeted suggestions with a bit more info 🙂

[Lillieziggie in reply to LoneEra]

Yes I've been referred to physio, CBT, I think OT, was diagnosed in Feb my GP still waiting for letter off hospital until I can get my prescription, can never get through to the GP so at the moment I'm just about managing tbh, I bought a full body pillow which does help and a heated blanket not sure if that'll help but anything is worth a go. Any tips would be appreciated thanks.

[LoneEra in reply to Lillieziggie]

Email your GP and also call the rheumatology department and chase that letter! Be persistent, meds can make a big difference for some people.

Other self help measures and aids (they don’t work for everyone but could be worth trying):

- TENS machine

- Gentle stretching and exercise

- Pacing

- Epsom salts bath

- Mindfulness

[Yassytina FMA UK Volunteer]

Morning, I am wondering if you are on the list to see a rheumatologist ? I would differently see either your doc or practioner nurse and discuss pain management (you might have already done this) but before you really start to sink discuss your mental well being , if we find ways to help us cope by either medication , CBT sessions , it’s a way of moving forward, I know my medication has certaintly helped me so much for anxiety/depression. It’s been very hard with lockdown and I hope by places starting to open from Monday that will help us feel alittle bit more positive. I will look into this full body pillow , Thankyou for the advice xx

[Vixen04]

Hi Lille, a new diagnosis is both good and bad. You finally have an answer as to what is going on and then you realise how much your life is going to change. Lockdown has definitely been so hard on us fibromites and many of us are feeling so lo. I had a blood test done recently and they found I wasn’t producing serotonin which didn’t help with my mental health. I was given medication and the difference is remarkable but I do still have days when I feel really low again. Learn as much as you can about fibromyalgia, reading only recognised medical sites! There are so many different kinds of things that affect us, not only the pain but the fibro fog & so much more. You need to see a rheumatologist or a neurologist as GP’s tend to blame everything on fibromyalgia which is so frustrating. Knowledge is power and helps you to process your diagnosis. As mentioned in another post CBT, mindfulness etc are all ways of helping ourselves to get through bad days. Allow yourself to go through what is the same as the 5 stages of grief for the change in your life and remember that things will get better when you’re put on the right medication (Pregablin has the least side effects as it’s the pure form of Gabapentin, a consultant will be the best person to deal with this as pain management and GP,s can be helpful but not often). Remember to be kind to yourself as fibromyalgia does change your life. I too was medically retired at the age of 38 which completely devastated me. I had about a year where I was doing fine and then it hit me like a brick wall &I was in bed most of the time. However on a combination of meds (I also have rheumatoid arthritis and Sjögrens Syndrome so have meds for those also). It helps to understand what causes fibromyalgia- it’s a central nervous condition usually caused by childhood trauma. It’s not the trauma that causes it but the suppression of emotions. This can also continue into school and work as there may have been bullying, both at school and work. You may have a colleague who is always on your case making life miserable for you. Again we tend suppress more emotions. It’s like filling a jug with water a little bit at a time until it overflows. This means our “fight or flight” switch to break and instead of coming when needed it’s on all the time so that’s why it affects the central nervous system causing fibromyalgia. I know this as my Professor of rheumatology explained it all to me. As I said it’s usually childhood trauma but not always. Childhood trauma could be a death in the family, abuse of any kind, bullying etc, it doesn’t need to be something big. Understanding all of this can also help process your diagnosis and may help with the depression you’re feeling.

Feel free to message me if you want to, if you have any questions for example. Also, fibro tends to affect type A people. People who tend to say “yes” to anything we’re asked to do.

Good luck do your research and don’t take no for an answer. My professor told me to always question doctors or consultants as they’re only human the same as us! I now do exactly that & ask them to explain why they say what they say or question why they want to do certain things. It works most of the time. Have a list written of what you want to ask and be persistent while being calm and reasonable, even if you’re mad as hell inside.

I hope I’ve helped a little, gentle hugs, Claire x

[Lillieziggie in reply to Vixen04]

I did laugh a little with the yes person, I'm definitely a yes person, I suffer brain fog terribly, I'm now trying to remember what I've read lol , no seriously I have had a couple of tough years regards to my job, could be quite stressful, my daughter had a very serious car accident just before lockdown, I've already seen the rheumatologist, I'm now on waiting lists for physio etc. You've certainly explained it better than the Dr, thank you for taking the time to reply, when a Twitter friend of mine told me about this site I was a little apprehensive as I did think what's the point but I've been proved wrong, I'm not very good talking about myself but very good at taking advice so thank you I do feel better

[Vixen04 in reply to Lillieziggie]

Hey, glad it helped. As I said my Professor said explaining things in an easy was isn’t something most Dr’s are good at but he’s so down to earth it’s amazing. Sorry to hear about your work and especially your daughter, I hope she’s doing ok now. It becomes easier to talk about your health on here as there is so much support. Feel better, Claire x