Newbie(ish) - feeling very down

I'm usually a completely glass half full person but I've felt really low for the last couple of days. I was diagnosed with fibromyalgia at the beginning of 2016, as well as chronic sacroiliitis, to add to the rheumatoid arthritis, lower back issues and bursitis that I already had.

What has really floored me though is breaking both ankles (each in two places) in a simple fall last summer. The surgeon thinks the bones have healed well, I've been doing lots of physio and hydrotherapy -as much as the pain will allow. My dose of gabapentin has been increased to try to help me do more physio and I take oramorph at night to help me sleep - I couldn't function if I took it during the day.

But I am still in lots of pain, dread getting out of bed in the morning because I know every step will hurt, and have felt like a prisoner in the house because my mobility is so limited. I do have a wheelchair but can't really get myself used to using it on a routine basis. No-one is quite clear why I'm getting such pain and sporadic discolouration of the left leg (that foot was operated on - the other in a boot). CRPS was ruled out by a specialist last week - my surgeon is referring me to a rheumatologist to see if RA or fibro is causing this, and will treat me for my spine/sacroiliac problems which have also been getting worse. (I did do a previous post on CRPS which is why I am not completely new, though forgot to put newbie in the title).

Ordinarily I manage to stay pretty upbeat and optimistic - I know there are lots worse off than me. Don't quite know what started this slump, but certainly made worse yesterday when my 13yr old came to me in tears because his "friend" had been making unpleasant comments about my health conditions and appearance. I know I shouldn't be sensitive about the ignorant comments of a 13 yr old, but the thought that these things are being said about you, and used to mock my son, is really upsetting. Today I can barely drag myself out of bed.

Sorry for posting what is essentially a long whinge, but thought getting things off my chest might help and hubby is out with friends so I can't rant at him.

9 Replies

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  • That sounds like a horrible set of experiences. First, the Fibro, it will improve with medications once you find the right combinations, so don't think you will be afected like you are now for ever, especially if you keep on at your GP until you have the ones that work best for you.

    I am lucky in that I live in a farming area, and my undoubtedly unkempt appearance due to my illness, looks in keeping with the country life. This is a very hard thing to deal with, with kids in urban areas though. It might help to suggest that your son says that you are usually in your work clothes. However untrue this may be, it is a simple and logical thing to suggest to a rather stupid child who doesn't yet understand the complexities of serious illness. All the shepherds around here think that I am a gardener. Well a few days a year I manage to do a bit in the garden, but "Gardener" really doesn’t quite fit the bill generally speaking. The worst problem with my appearence is my hair. I have a damaged nerve in my face that is very painful if I get it cold, and hair washing is often completely out for several months at a time., so I wear a hoodey, and keep the hood up all the time when I am out.. Young people seem to understand hoodeys, and can relate to them. Also, joggers, but as I say, I am lucky because every day for gardeners, especially in rural areas is a "wear what you want" day. :-)

    Never think that you can't complain here, when you fell terrible. It helps us all if we can be honest with one another, and it helps us all to understand that other people are experiencing what we do.

    I hope things pick up very soon, and the chronic pains that you are experiencing are treated properly. A great many fibro sufferers have specific, chronic pains, and referred pains that began as injuries, as well as the general pains that the condition brings. These can be sorted out with long term physio or pain control - but you often have to fight to get proper treatment

    I sincerely hope you are feeling better soon

    X Dinah

  • Hi Lolacat, Likewise I am normally upbeat but not at the moment. It isn't a crime to feel down occasionally - we need good and not so good to know which is which otherwise we would never appreciate the good times.

    As you know these boards are here for us to rant and rave safely, share advice, have our feelings acknowledged and generally have some fun too.

    I too have one foot which is often a totally different colour to the other and the doctors haven't a clue why.

    We all worry about our children and perhaps a quiet word with school might help so that they can keep an eye out for any underhand bullying or comments. At least you are aware it is happening and it isn't being hidden from you, as painful as it is, probably better to know than be kept in the dark.

    Chin up - we are all here when you need us.

    Dinkie

  • Hello and welcome

    Welcome to our forum you will find lots of useful information on the home page and in the pinned post so please do take a look you will find a lot of friendly helpful people in similar situations. So please do feel free to share your experiences and thoughts will others. We are here to support as best we can. The following website also has a lot of useful information and research.

    fmauk.org

    We hope you will found this is useful as lots of information on there.

    Good luck on your journey

    FMAUK Volunteer

  • So sorry to hear you are feeling down. I do hope this difficult time improves for you and rest if the one thing you manage to get. We are here to support you so keep sharing.

    Take care my friend may you have a pain free night

  • Thanks Dinah, Dinkie and Creativeness1 for your kind and thoughtful replies and for coming to my rescue. While I'm sorry that others have to go through this pain it does help knowing that there's someone else who understands. Thank you for the tip about work clothes - not sure what a civil servant working from home is supposed to wear but in my case some scruffy sweat pants accompanied by cashmere socks and jumper (not hyper sensitive to touch but this is the only wool I can tolerate on my skin). But how lovely it sounds to be surrounded by shepherds!

    Will speak to the school without naming names - we know the parents so have just let them know what is going on (without being judgmental). There is always a positive and perhaps because he was feeling a bit vulnerable my son wanted to spend a bit more time with me this evening - just finished watching a film together, whereas he'd usually be in his room. Sure I'll feel a bit better tomorrow (mentally if not physically). Goodnight to all.

    Lolacat

  • Hi lolacat

    I am so genuinely sorry to read of your suffering and struggling and I sincerely hope that you can find some resolution and relief to these issues my friend. Kids can be so cruel at times and I can imagine you are very hurt because it upset your son so much who clearly loves you a great deal. I want to truly wish you and your son all the best of luck my friend.

    All my hopes and dreams for you

    Ken

  • Hi sweetie. I'm life no matter how we look or walk, whenever our children get penalised for it we feel worse than if people poked fun at us, that's our parenting instinct.You can chat with your son about how it doesn't matter to you what is said about your ailments that bullies will find ANYTHING to bully someone, it just happens to be your illnesses.

    Most times those who bully like this have something lacking in their own lives. Mostly feeling unloved by their own parents, outs clear even with all your ailments and pain that you love and cherish your sons feelings. So that is what you can implant in his mind that no matter how much pain you're in etc or how difficult your life is, that your son is your main priority and you respect and love him so much and maybe it might help him realise the words of others don't matter.

    I'm so so sorry about your ankles. I had the same issue with broken ribs twice in a couple of months, I too feel that in lucky in many ways but when twice my ribs went,I felt down, I think it's because it was unexpected and like, the not so nice icing on my cake of life. I was mad and irritable and when it happened twice I was furious. So deep breaths hun, we are here for you with so many similar issues. You'll get your half full feeling, but stress does make it worse, the pain. Gentle hugs and warm love xx

  • Thanks the author and VibrantLinda. Really feel for you breaking your ribs twice. With my ankles I remember even as I was falling (I could tell it was going to be bad) thinking how can this be happening to me after everything else. Can't imagine how awful it would be if it happened a second time. I am v cautious for this reason - I'll walk inside without aids, but not outdoors, even for v short distances because I just don't feel stable.

    My son knows the comments are just stupid, but he has been quizzing me about whether they will inherit conditions from me, both serious and not so (one of the comments was that he will get "warts" like me because He shares my skin and I have a few moles on my fac). I've reminded him of all the good family genes - my skin accounts for his gorgeous golden brown colour because we both tan easily and don't burn (sadly I'm pretty pale at the mo - not been outside much recently) - longevity on both sides of my family, no dementia, little cancer, plus if he takes after my dad a full head of hair when he is 80. He will be fine - he has a v sunny disposition and is an object lesson in living in the moment.

    And as for me, nice quiet house as my son is out shopping with his dad, my daughter is revising for GCSEs and I've got a new crime novel to read so will snuggle up with that. Hubby taking me to a nearby country pub for a drink tonight to help cheer me up.

    Thanks again

  • Hi Lolacat

    I'm glad you shared your experience. You've been through a lot and it's not easy dealing with chronic illness so it's not surprising you feel low. It doesn't mean you will always feel this way though. I find I go through cycles of it and there are times I'm in a really dark place and then at others in a strong, resilient place. I always try to remind myself the lows will pass and they do. I hope yours does soon and you enjoyed your pub trip. A little pleasure when you are feeling really low is a good and really important thing to do.

    X

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