A Bit of stretching of other's imagination.

OK it is like this, I have had fibro for about 30 years - I managed to put up with most things until about 6 years ago, 20 years ago I had to give up work because I couldn't manage.

But who the devil had heard of fibromyalgia 30 years ago? Talk about the ignorance of some people HaH!! I was also gifted with a congenital renal disease, quite a rare one that hardly anyone has heard about (including most GP's). However, I found that more people made allowances for my incapacity if I told them I had a renal disease and never mentioned the fibro, but once I mentioned fibro a vacant expression floated across their faces and their eyes would glaze over. It felt as though they thought I was making up stories. So renal disease it has stayed for the past 30 years. I am 66 now and have been officially retired for six years, fibro is more widely known, but seemingly not as widely accepted - so I think I shall continue mentioning only the renal disease (which has been nicely controlled for a number of years) after all, it is more readily understood by the majority. I know I sound cynical, but that is just the way it is. - Today, is a bad day, head hurts, back, toes, knees - guess the next diagnosis I get will be arthritis or plain old age..

[TheAuthor]

Hi Doeidea

I am so sorry to read that you are not feeling too good today, and I genuinely hope that you can find some resolution and relief to your problems. I can fully understand why you only mention the renal disease, and what you have had to endure both physically through your illnesses and emotionally through the ineptness of others.

I was wondering if you get everything that you need from your GP and Specialists for your Fibro? As I can imagine that they are on tender hooks themselves wondering if they can give you a pain killer or not?

I genuinely hope that you start to feel better soon.

All my hopes and dreams for you

Ken x

[Hidden in reply to TheAuthor]

Hi Ken, thank you so much for your kind words, I was quite taken aback by them so much so that I ended up in tears. (still not a good day sorry). I think I have rather isolated myself from the world. I have sisters who think I "put it on" so much so that one of them once told me that I didn't know what pain was until I had had an ingrowing toenail - boy oh boy they must be REALLY painful!

Not really had much response from GP regarding the fibro, but it has only really become so debilitating the past six or seven years. I do get DLA, and I have a motability car. Odd really I don't do many miles, but knowing that it is sat there and I COULD go out if I so choose, makes life easier to cope with. The GP organized Social Services to provide me with a commode (yuk) and a thing that goes in the bed that will raise me to a sitting position when I cannot move in the morning - hubby hates that because he likes to sleep flat and the back lift won't allow that. So it resides in the spare bedroom and I use it when things are really bad. I am trying not to let these irritations in my health demolish my marriage. OMG I have just let the floodgates open. Really sorry to bend your ear, but just sometimes it has to all get out.

[TheAuthor in reply to Hidden]

Hi Doeidea

I am so sorry to read that you are still feeling down and under the weather, I think you have summed up how most of us feel from time to time. Please feel free to let it all out on the forum, it is what we are here for.

I am so sorry to read that your sisters do not understand how you feel, so many members have said the same sort of thing to me about their family and friends. I was wondering if you have ever thought about joining a local Fibro group in your area? As you will be with others who truly understand what you are living with?

I was given one of those toilet frames with a raised seat yesterday, so I am still trying to work out how I feel about it? Please do not worry about crying when you need to get things off your chest, I appear to do this a lot these days, and not because I am depressed but for the life that I have lost ...

Take care my friend

Ken x

[denvajade]

Hi there you are absolutely right, people think oh yeah!!!!!!!! all in the head! it is abit the same with RA until you are deformed with it they say oh yes I get a bit of arthritis too.

[Hidden in reply to denvajade]

Hello Denvajade, Thank you so much for your response to my post. I see we are on the same wavelength regarding the reaction of others towards our life's idiosyncracy, With groups like this available to us, we will overcome - after all the only thing we have collectively asked for is a little help and understanding. Regards Doreen x

[Ginsing]

Morning I am so sorry you are finding the pain difficult well more difficult than usual. Well it is always with us isn't it. Sometimes quieter than others and when it scream it doesn't even let us dream! Take heart it will ease soon, have you had your medicines of course you have well time for a cuppa sit down and be gentle on yourself. Hopefully there will be some thing to read that will make you laugh!

Take care oh I do love bourbons have you got any - ke loves a good biccie

xxxgins

[Hidden in reply to Ginsing]

Hello Gins, thank you for your kind words of encouragement and support. This group has been a real lifeline this week, it has been a particularly bad one and the damn thing really got to me. I do so hate feeling sorry for myself.. problem is I think I do it too well, and that is never a good thing. I agree with you about the bourbons, but my one true love is Wagon Wheels, my constant gripe is that they aren't as big as they used to be well that and I have to ration myself or I would be as big as a house, so I limit them to one a week, (but it is really difficult)

Regards, Doreen

[hamble99b in reply to Hidden]

have you seen french & saunders' sketch with the wagon wheel?

I saw a welsh shop selling home made delights - inc teacup sized giant "walnut whips" now they could probably make you a wagon wheel

I was first diagnosed with fibro 36 years ago when it was called "muscular arthritis".

[mitziblue]

Honey I know how you feel with the fibro. Don't be discouraged about other people. You just worry about yourself. I had to go to a pain clinic to make life bearable. With your kidney's being bad that's got to affect what they will give you. I pray that you find relief from this terrible disease. xxxx Mitzi

[Hidden in reply to mitziblue]

Hello Mitzi, Thank you for your reply to my post. I have received several posts with encouraging words. I tried the mindfulness course at our pain clinic, I still try and do it , but I have too many hospital appointments and awaiting tests to really get into the sessions seriously, Once this current round is over I will take them up again. I have a problem with the medication, the doc has given me morphine as a slow release capsule, which does keep the worst of the pains at bay, but seems to have other complications attached to it. Oh well, I shall keep on trying. Kind Regards Doreen xxx

[mitziblue in reply to Hidden]

Ask if you can try Opana ER I'm very weird with med's and it's the only thing that I can take and hopefully it could work for you. Let me know if you need anything, I've been around the bend. Hang in there sweetheart!!! xxxx Mitzi

[Hidden]

Hi Mitzi, Regarding you post four days ago, you suggested that I might ask my GP if I could try Opana ER. Can you please give me the info about this. The main thing I am worried about is whether or not is had anti-inflammatory properties or not. I cannot take anything with those type of properties in it. Thank you so much for your ray of hope, I have my fingers firmly crossed. Regards Doreen xxx