Everything down to Fibro.

My left leg is driving me mad with pain and a "nest of bees" I think have taken refuge there. Have Lymphodeama so my leg and foot are very swollen. Awaiting an appointment at the Lympho clinic but whilst waiting cannot put elastic stocking on as it is too tight and cuts into my leg around the top of the ankle and if I left it it will break the skin.  My buttock and leg are very painful and also seem "dead". Made private appointment with Neurologist but had to cancel it when I was quoted £210 to see him. Can anyone out there suggest what I can do. By night time my left knew and foot are massive. You're told to move about but I am in too much pain and painkillers aren't helping.  Everytime I go to see GP he puts it down to Fibro.Have never had MRI or X-ray.   Can anyone suggest what it may be and what I can do. Cant go on much longer like this.Rheumatologist confirmed it was Fibro, but wasnot getting this dead leg and buzzing then.  Had Fibro for 22 years now. But things seem to be getting worse.


This discussion is related to buzzing.

[Dagun]

Hi Abbey, I´m sorry that this is happening to you, it is difficult not knowing! I would think that this is not connected to the fibro, but ofcourse I´m no doctor. If the area that is swollen is also very hot that would be very bad and then I would go to the ER. But if it has been like this for days, and is not hot or getting worse, then maby this is not something to worry much about. But has your GP seen it? My husband got a bloodclot (dont know the right word sorry) then his leg got very hot and swollen, but that usually happens preatty fast, so I guess you dont have that. It is awful how expensive it is for you to see a neuro. I hope this this gets better soon.

My best,
Dagun

[Abbeystead]

Dagun, It's very kind of you to answer me even if you cannot give me concrete advice.  Its just that I'm feeling very low at the moment and everything is getting me down.  I know its Lympho with the leg. Had a scan on it about 6 weeks ago and there were no clots there.  Have decided to see the Consultant Neuro on Wednesday night. Forgotten about a medical plan I pay into each month and then realised I'd not claimed for a consultansy in the past year so rang them and they I would be covered, so thats a blessing.   Seem to be falling to bits lately and no one seems to care.even the anti depressants dont help. Still at 75 one does expect these things to happen, but not all at once.
Ot know where your answering from but here in Liverpool UK the weather is 26 degrees - no good for sitting out or swollen legs.  Anyway Dagun  thank you once agin for your reply. Will try and get back to you when I maybe have some answer.
Bye for now.
Avril

[Dagun]

Hi Avril, I was reading about Lymphodeama now, so now I understand a little better. I also thought you were not sure what you were dealing with. But I am sorry this must be awful. You are then wondering why your leg is also buzzing and painful, is that not normal for Lymphodeama? And the GP thinks it is related to the fibro? Am I now getting it right? :)

As you read in my journal, I have all kind of nervepain and buzzing and so much other thing going on. I think that when you have some kind of nerveproblem (ms, lime, lupus and more) doctor often write everything down to fibro, my neuro did not though, but many peoble that I have read about, having bigger nerve problem, were told they have fibro some years ago. So I am glad that you´re going to go to the neuro, to get this checked out. My advice to you would be to not speak about fibro, unless he asks. I would just tell him the symptoms you have, also the ones that was said to be fibro, and let him figure this out. And before you go write everything down that you need to tell him. Good luck! And let me know how it goes.

My best,
Dagun

[Abbeystead]

Thanks for your advice Dagun.  Unfortunately here,before you go to see a consultant privately you have to get a letter from your doctor telling them what your symptoms are and it will obviously mention the Fibro.  I have been reading about a specific complaint which I think I may have but my GP insists its not what I think it is and that is Pupdendal entrapment but at the same time, he will not refer me for an mri scan. Have had CTscan as I have an inflamed bowel condition and IBS and I know for a fact that had I of had cancer this would of shown up but luckily it didn't.However,the pain continues in buttock, leg and pelvic area which I am convinced is due to some nerve problem. A tleast the Neuro will have some idea.
Yes I will write everything down.Always do as soon as I get there my mind usually goes blank and I dont jknow which pain or area to start on first. My daughter said she will come with me but sometimes there are things that you dont want your relatives to hear. Like orgasms caused through the nerve entrapment.  I really laugh about this - daren't tell my husband though - he'd think his luck was in.ha ha!!
Anyway Dagun will definitely let you know.Anyway how are you?  Reading your profile was like reading exactly how I feel.   Take care and best wishes.
Avril
P.S.Pregablin was prescribed for me and amytriptiline, dihydrocodeinand Diazapam (which I have been on for years)  I am reluctant to take the Pregablin and Amytryptaline as they make you feel like a zombie. Take 1 or 2 Dihydro and diazipam. Helps a bit but only takes the edge off.  GP,I know, is fed up with me because I won't take the tablets prescribed. I'm 75 and look as fit as a fiddle that's why I dont think he believes just how bad I feel.   Will go again and hop out to my kitchen. Bees are having a fine time in my leg and foot. LOL!!!

[Dagun]

Avril, you got a great humor :)! And that can be so important, when something like this is going on, instead of getting anxiety and be stressed out. But funny thing, what you said about the orgasm, because I once had a muscletwich down there and told my husband how strange it was and that if it were a little different it could have caused an orgasm, LOL. I think you´re right we have some simular stuff going on!

You did go to the neuro today? Tell me what he said. I´m going next week and I cant wait!! I want to know what this is.

My best,
Dagun    

[Abbeystead]

Hi Dagun, Yes, went to see Neuro at.6.20 last night,Was best £210 I've ever spent as came away with a lot of hope allbeit a little premature.  He listened to me (well he's bound to where cash is involved).Asked me if I'd had any scans and X-rays. Took my blood pressure which he said was quite high and asked me if I had had treatment for this which I informed him that I hadn,t, even though only 2 months ago my cholesteral had gone up from 5.3 to 6.4.   He was absolutely appalled that nothing had been done to trace the source of my pain. I told him that my GP put everything down to Fibro but I wasn't satisfied by this as I feel there is something more going on.  He is arranging for me to have an MRI in his clinic here in Liverpool.  Couldn't thank him enough - almost kissed his feet. Told him my GP has been refusing me this and that is the reason I had come privately to see him.   Didn't take my husband into the room with me because he wasn't aware of the orgasms I'd been having and I din't want the "old bugger" to know either and get his hopes up.ha ha!!.

Any way Dagun he's writing to my GP re blood pressure and I think maybe giving him a  rollicking for not doing  more.  So all in all I was quite pleased with the way things are going at the moment, still got my buzzing and pain though.  We stopped at a pub on the way home but couldn't get home and to bed quick enough and get to bed to ease the pain. Can sleep OK,but its just when I wake up and put my feet to the floor that it all starts.

Rang GP the other day too as Lymphodeoma isn't helping. There again I had to get on to the Lynpho clinic who told me they had faxed my GP on 15th May but had had no reply so I rang surgery on Tuesday and was informed that the doctor was sending my details. But had I not rang I think I would have been lost in the system again. You have to be keeping on top of things all the time.  The health service here is going down the nick. Now I'm no racist but its only common sense that if they are letting more and more people into this country who are making no contribution i.e. paying taxes, not their fault as there are no jobs, not even for our own people, well there is only so much a sevrice can take before it starts breaking down. Its like filling a bag with more and more water, eventually it will burst.

Oh Dagun, I have gone on a lot.  Please tell me about yourself and the problems you are experiencing and what help you get where you live, I'd be very interested honestly.   Only those who are suffering can relate.Those who are not, even those close to you don't understand.

Yes Dagun I do have a sense of humour and really laugh at myself,that's why I believe the doctors dont realise just how bad I am.Maybe I should go in with a gloomy face and not smile and then they'd believe me,but that's not me.Even went in the pub swinging my walking stick pretending to be Charlie Chaplin but at the same time the pain was seering and I really felt like screaming with it.   Oh, never mind another day another dollar, just have to get on with it.
Thanks for remembering me and writing really appreciated.
Avril,Liverpool. X