I'm sure it's partly to do with all the kidney drama, but also I'm in huge amounts of pain today. The doctor told me to stop taking my pain meds while we waited for the test results when he thought I had kidney disease so after 5 days without I am in agony, and can barely put on foot in front of the other. Clothes, bedding, towel hurts my skin, like it's heavily bruised, and moving about is unbearable.
Because of the way the surgery has treated me lately I've not really been on top of the pain even when I was taking all of my drugs, and my rheumy has written to my GP suggesting he introduces Gabapentin and amitriptilyne and refer me for hydrotherapy for the HMS she diagnosed. He hasn't even mentioned these things, usually because he's too busy making me feel like a fraud. Because they made me feel like I was neurotic and a time waster over the kidney thing in that phonecall, I don't feel able to now make another appointment to discuss my pain. But can't go on like this.
Then today I was going to go to my sister's for dinner to see my 3 year old nephew, but my pain is so extreme, that the 45 minute car journey to get there (the same back) is completely out of the question for me. I find travelling very difficult when I'm well (or rather stable) I'm best if I can keep moving gently or if I can lie down but sitting kills me. I phoned my sister and apologised and explained I just wasn't well enough, at which point she told me how upset that little boy would be, and how she'd now have to comfort him because he'd been so excited about seeing me. She finished off by saying in future she wouldn't tell him I was coming to stay so he didn't get traumatised the next time I let him down. I feel utterly rubbish, and dreadful, and bad. She never brings George to see me, I always have to go there, but now he's going to think I've let him down on purpose if she tells it in the way she was making it sound to me.
All in all I feel pretty useless, and poorly. And like no one understands or cares. Does anyone ever get completely overwhelmed and wonder what the future is going to be like if this is what life has in store? I feel like Fibro is winning xxx
Oh dear, you poor thing. That's not fair of your sister. Can you ring your nephew and say you'll see him soon, and keep it open ended?
Is there anyone else you can see at the surgery? I can't see not taking pain meds now would make much difference if he says your sample is normal. If you feel like you need them, then I would take them.
Can you get someone else to make your appointment and to go with you?
You should feel comfortable with your doc, if he is not doing anything for you or with you, then I would definitely change. It is not your fault the doc is such an idiot and doesn't inspire you with confidence. You deserve better.
Sending telepathic hugs and a virtual rub of your shoulders.
Take care
Nancy Xx
Thanks Nancy. I don't really have anyone to take as I'm new to the area and live with my parents who don't understand Fibro and aren't interested in finding out about it, so they don't really 'get' why I'm upset. It's all a bit of a muddle. Xx
Oh {{{{Alex}}}} fluffie cuddles galore for you, I'm so sorry you feel this way
If only we could control the things that come out of people's mouth's
Could you not send your nephew a gift and a card with a photo or something so he knows you care?
With respect to your GP being strong and knowledgeable may help, tell them that you know what the Rheumy suggested and you could always ask for a reason why you are being treated this way. You could look for another GP practice and possibly ask if they have a fibro friendly GP at the surgery.
It seems you have some thinking to do hunny and whatever you decide there will always be your fibro friends here to listen and care.
Take care my friend xxx
xxxsianxxx
I`m so sorry I have spent the last half hour trying to think of some advice for you. But that is not some thing I am good at. I am sure that somebody will be able to help. All I can do is send you lots of hugs and for to know that I do care love Sue xxxx
With regard to my reply to this question on another thread, I am truly puzzled you're off pain meds. Their lack won't affect the results will they?
And yes, there are times when even on line friends are not enough. I wonder if like me you miss that ability to turn your head in the night and talk to someone?
I really feel for you. Your nephew is unlikely to understand the full implications of what's going on. adults are bad enough as you relate.
It's probably a good idea to let George be pleasantly surprised but, yes I hope sister puts it diplomatically for all that.
You know of course that we fibro friends understand and care. I've had futility thoughts but not over fibro - yet.
Really gentle hugs in view of the state of your skin. Paul x
I think you are probably right, Paul the badger. I do miss that connection, although after my last experience am not really in a hurry to go there again. My partner and I split up because I put weight on with the lack of exercise as the Fibro took hold so was no longer the 'hot size 12' girl he had fallen for, and I didn't want to go out as much because I was tired, and he got bored. So that was down to Fibro too, well Fibro and a 35 year old bloke with a 17 year olds maturity! Now I don't see myself as 'a catch', more a hindrance. So now, in the middle of the night, I turn my head, and talk to my iPad mini
Hmph. Well who does not change? I thought it was "for better or for worse, in sickness and in health".. mine didn't promise to obey
I'm not exactly God's gift. . . but you and I are persons in our own right. I don't know about hindrance but then I've not had to put up with you for a day. Nevertheless I think you're putting yourself down unnecessarily.
And yes, we blokes do tend towards immaturity. That's his loss. Do you feel well rid or wish it hadn't happened? You don't have to answer that of course - not even in private. You could do without all the extra on top of the fibro and everything else you're undergoing and its a shame family seem the least supportive when they should be more so. Glad you put a card in the post for George. Hope it helped.
Here, have my right shoulder, the other one's in use, careful it's the painful one
Oh I'm definitely well rid. There is no question. There is immature then there is Peter Pan. He didn't want to try for kids til his late 40's, but couldn't grasp why that would pose a problem for us, and why going clubbing with the lads every weekend was not ever going to be ok as long as it was his main priority! I blame his mother haha! Thank you for the shoulder, I hope I didn't get too heavy xxx
Glad to be of help. Your story is bad enough and I've come across different. I hesitate to say worse because we're all different. I'm inclined to agree with a lot of that.
Each in it's place. There's a time to be serious and a time for fun. Hey ho.
You're the same person and from what I've read from you, you're great. He clearly didn't appreciate what he had or what he's missing. A cake and eat it type.
When an illness stops you moving your stomach still demands what its used to and it's a tough road to walk alone.
Yeah, so how old would he have been with kids at uni? Worn out for one and not so retired.
So sorry to hear you are feeling so low, if the rheumy has suggested you have gabapentin, ect why don't you ask you doctor for these saying your rheumy doc told you to ask for them, if they won't give them to you then as to be referred back o you rheumy and thn tell him or her that your doctor isn't listening, failing that change your GP, it's awful when they don't listen to you isn't it, I think they could be a little more understanding than they are dont you.....hugs. Dee x
Thank you all so much, what lovely friends you are. I need to have a word with myself and get cross with the doc not roll over. I think I'll take my moany, whiney self to bed and lick my wounds and take all those hugs that have been proffered by you brilliant people, and wake in the morning with mission pain relief my number 1 priority, (while stopping to send a nice card to George). Xxx
Hi Alex, I typed out a long reply this morning and it seems to have vanished, I just finished another and went up to re read you post to make sure I hadn't missed anything out, and bang, it's swallowed it again. So I apologise and will keep it shorter, I think your sister is a bit out of order trying to pull emotional blackmail on you when you are so ill. It might be an idea to go into the
fibroaction.org site and print off a few of the articles and give them to your family to read, just so they can stop compounding your problems by being so blinkered. Another good one would be to google "spoon theory" (though it probably is on the site ) and print that off. I've given it to some people who don't seem to grasp my limitations and it has changed the way they treat me, with much greater understanding. I do so hope it works for you, but more than that I hope that the test results come back with nothing too serious.
I am sending lots of positive healing vibes your way and delivering some very rare a Foggy hugs ((((Alex)))) cos I really think you need them at the moment
Take care my friend and so let us know how things get on, please
Just wanted to say I was utterly shocked and appalled at the passive aggressive behaviour of your sister. With all you have been through lately she should be bringing your little nephew George to see you and cheer you up. Her attitude stinks, especially the way she uses her own son as a stick to beat you with,i've yet to meet a 3 year old who has been "traumatised" by a lack of a visiting aunt!
Please don't let her vicious words hurt you any more, she obviously has a problem/agenda for behaving in such a cruel way.
I recently had to stop all meds for 3 days and it was agony, my whole body went into spasm and i couldn't 'travel' as far as the front door, let alone a 45 minute journey. You need to be gentle and kind to yourself, the way you would look after any one else in immense pain and exhaustion. You will feel better soon I am sure.
Your sister was evidently only thinking of herself. Though, probably did just want to see you. I wouldn't feel bad or be disheartened by it, I've learned to accept family, friends etc. Just can't or won't understand! Even today I had a doctors appointment, I was too ill to move and missed it, got an earful from the receptionist and even the sister of the surgery. I had to fight for another appointment. Evident that even health professionals don't always give much understanding.
I definitely try for another GP. Hope you feel better soon
Oh My Dear I am sending you one huge but very gentle hug cause it is just what you need. I would ring her back and talk to her her. Firstly the little chap your nephew is how old? Now deep breadth in and slowly out very slowly so you dont add more hurt to your poor body.
It really is a rather rotten way to put preasure on you she should of all people be able to understand your pain and give you grace to step aside if you need to. Have you done his before or is this the first time you have said "sorry I cannot come I am to poorly".
Now ring your Nephew and say Sorry cannot make it to stay because ---
Children generally have more common sense than we realize.
Next get an appointment to see your specialist and get your sister to take you ! hopefully she will learn a lot more of how your pain is affecting your life.
If none of this work try and see someone else even if it means atrip to A&E which should be last resort.
Gentle hugs Petal. I hope you feel better soon. It's horrible when pain overwhelms us.
Hugs
Jillyxx
Hi there
I was just wondering whether you have a copy of the letter from your Rheumatologist suggesting that you start taking Gabapentin & Amitriptyline? If so, perhaps you could take it to your surgery with you? (Although your surgery should have a copy anyway).
If not, could you get a copy?
My pain has been unbearable this week, so you really do have all my sympathy.
I had to stop my medication for a short while and could barely crawl out of bed.
I changed my surgery and it's the best thing I ever did.
Gentle hugs
xxx xx
Hi there, I can really feel for you but must admit I am probably not in a position to offer any advice. All I will say is that your sister is being very hard on you and your nephew will be fine, he is only 3. At that age, the next time you see him and give him a cautious hug he will have forgiven you for anything. At this stage I think you need to be a little selfish and take care of yourself it is not your fault you are unwell. Hope you can get to a stable and less painful place soon ...Susan
bluebell is right - if you have a chance to call your nephew that would help sooth your mind. Children are very "in the now" though, so he will probably have forgotten why is was upset by breakfast
your sister sounds like she was upset, and you are right - if she came to visit you that would ease things for you and increase the chances of you being able to engage in family activities - perhaps it would be worth mentioning to her, once she has calmed down.
my husband had an auntie who was often less mobile and she was one his favorite aunties, he remembers her being fun, mischievous, with tall tales - he hardly thought of her mobility issues.
I am so sorry to read that you are having such difficulties at this time and I sincerely hope that you can find some resolution and relief to your issue.
I genuinely want to tell you that you are not useless, and that you are a valued and cared about member of our Fibro community.
It really sounds like you need to make another appointment with a different GP, as this doctor does not sound conducive to your welfare!
You take care my friend, and please keep us up to date with how you get on.
All my hopes and dreams for you
Ken x
I have had that feeling for the last 2 years. I haven't lived. I have just existed. I don't expect people to understand because I don't myself. New start for me this year. I am going to be completely selfish and take any help I can get. First thing I am going to do is show my two boys this page. ( Ages 22 and 19 ) Then tomorrow phone the Doctor with a view to getting pain relief. Haven't been out for last two years so if she doesn't come to me will have to be a phone consultation. Have booked a holiday end of March. Going alone and looking forward to it. Not sure how I can get there yet but I WILL somehow. Good luck to you my dear and a great big hug from me. Time to look after yourself first I think. People don't realize that when you have to let them down it is not a choice, it is our life.
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