MERRYGOROUND

[LUPIN]

Hi everyone " this is me " , nearly 72 years young ( I wish ) , diagnosed with Fibromyalgia & Lupus some 30 years ago , a shock at first but just carried on with work , family , etc. Slowly I started seeing change in my body , eventually had to give up work. Everyday it was a different part of my body that was effected, Visit the Consultant , have the blood tests , get the results, chat about medication etc etc.
Now in my senior years I have worn out the path to my Doctors , osteoarthritis set in , had a total hip and knee replacement , unfortunately because of my Fibro my knee didnt take well , you have a 6 week window after op to utilize the new knee , I was so swollen after op that I was not able to work on my knee properly , hence it dosnt bend and is solid .
Unfortunately in 2014 I had Breast Cancer ( pagets disease ) and had to have my left nipple removed and a slice taken to check if it had spread, I was lucky , but after any op there is calcification and a residue of pain which means I am always on my guard for any changes , which meant last year I had to have a special core biopsy , TG the results were fine , but the fibro didnt help in the healing process.
Fibro is an opportunist , when you think you are doing ok , it strikes again , no guessing where , muscle burn, swollen joints and tissue , pain, there are no good days for me , just better bad days.
With the Covid restrictions I have not met my new Consultant yet , its self diagnosis over the phone, however I am hopeful I will be able to go to my November appt where she said I am due a complete MOT.
In the last 2 years I have been practically a sitting tenant at the local Hospital with xtra ailments , a lot I am sure is tissue based and inflammation , so I have been subjected to more "prodding".
Everyone is different , I find I have to pace myself and set myself doable tasks , otherwise life is a mess , even the smallest tasks sometimes I end up useless for a couple of days.
Pain management is at my discretion , unfortunately I am a " sensitive soul " where meds are concerned , and because of my Lupus also , I have to be careful what I take , which for my GP is a nightmare , especially if its a antibiotic .
In typing all this I wonder if I have gone overboard , In some respects I am lucky as there are others who suffer more , but believe me there are days when I curse , rant and rave with frustration of what might have been , but dosnt everyone say that ?, running out of space now

Take Care all of you , apologies if I have gone on too much,

 

[sunkacola]

Hi Lupin, you have not gone on too much, don't worry. sometimes it helps just to write away and let it all come out onto the screen. We don't all have to read it if we don't want to, so it's not any imposition on others. I read your post, and am very sympathetic of your situation. I am extremely lucky to be able to say I do not have all that you have to deal with, and every day I am grateful for what I do have and can do.

Don't worry bout going overboard. We are allowed to vent here, and there are many who understand.

I don't doubt that you have tried everything you can think of to improve or manage your situation, but just in case there might be something which would help you, you might read my post at the top of the General forum, "advice for managing fibro' etc. There are a lot of things in there that may mitigate some symptoms somewhat, just in case there's something you haven't tried that might help.

Fibro does seem to strike just when you don't think it will, in terms of flares that come when you didn't expect it. sometimes for me I know I have overdone it and can expect pain the next day.....and then, sometimes it doesn't even come, although it usually does. And at times there's nothing to which I can attribute the terrible pain I am in one day suddenly. This, I think, is one reason it is so hard for other people to accept that we are telling the truth.

I hope you have good doctors. come here whenever you want and post. As well as your being able to vent, I suspect you may be a person with a lot of wisdom on how to manage life with chronic pain, and others will benefit from your being here.

 

[Auriel]

That’s such a sweet message sunkacola I liked that

 

[Auriel]

Rant away I think you can be someone we can learn from, this is a nice forum it’s my 1st I would rant too but most of the time I’m sleeping from all the gabbapentin I like hearing when people have gone through things and overcome them I find it very admirable x x x

 

[JayCS]

Merry-go-round is the word I used to use for being to 45+ docs in 1.5y. My psychologist corrected me: It was a tour de force. That helps me, our images can pull us down or up. Mine didn't pull me down, it was sort of gallows humour, so helped too. But hers sure pulled me up.