Shocked, frustrated, depressed.....

[Newbee]

My doctor suggested a couple of years ago I might have FM, but I really didn't think so, but I was wrong. I believe after reading about this horrible condition I have had symptoms for about 8 years. Over the last three years I've been dealing with an infection filled abscess which tunnel and reappear then rupture and five surgeons and my family doctor have no diagnosis. I have had seven surgeries in the last three years to open the abscess and drane the infection and remove the surrounding tissue. I believe with dealing with that the FM has gone from were I could deal with to severe uncontrolled pain, swelling, no sleep, stiff as a board, water retaining, memory and concentration, no energy, depressed, stressed and cry most days.
I'm a on the go person and used to tackle normal daily routines but now I have come to terms that I have to listen to my body. I drove to the grocery store today and about 10 minutes into walking a flare up started. My left leg went numb, then pain, and it went into my spine up into my head which gave me a migraine. I forgot half the things I needed, and noticed my eye site was blurred when I started driving. I closed my left eye and my vision cleared up. The pressure I felt behind my left eye is new, it feels like my eye ball is pushed out and I'm afraid if I tell my doctor he'll take my licence away. Because I live in a rural area my doctor explained to me last month because of my pain being so high he would suspend my licence if I lived in town......😥
My doctor has me on Lyrica 450mg a day, codine cotin 450mg twice a day.
I am glad I found this site to talk and ask questions.
Thanks 👍

 

[diamond]

Hi Newbee it does sound like fibro.....and i am sorry you have got this horrible condition to deal with.

Does the medication help at all?

Regarding the abcsess the tunnelling and reappearing conincidentally i saw an item on a medical tv show called embarrassing bodies about a guy who had identical problem and an infection between his bottom cheeks that remained an open wound for a few years despite several operations to remove infection and surrounding tissue.

They eventually sent him to a top specialist who did two more operations to actually trace the direction of new tunnels that were not visible and in two stages removed all the tissue involved and he healed up well.

It was pretty invasive but very successful.

I know you must be at your wits end if you have had 7 surgeries. Could you research another specialist to see if its possible the infection and tunneling is deeper or in a slightly different area than they have been removing.

I know you have probably tried all this over and over but i don't like to think you have to put up with this as the stress on you and your body will not be helping your pain levels.

Could you go and see an optician about your eyes?

I do get very severe eye pain that lasts for days along with migraine and face pain. It feels like unbearable crushing pressure and like i have been stabbed in my eyes .

Our faces and eye sockets are all surrounded by muscles all of which can be affected by the nasty beast of fibro with its tightening and random pain.

Stay here and vent or ask away anything any time. Take Care

 

[Eyesup]

Hi newbie, welcome. It sounds like you have slot going on. I have days when I take my own liscense away! That's just the way it is, I've been out and had to call my son to come get me because if a sudden onset. Don't risk yourself or possably someone else getting behind the wheel when you know your not in a good place, know you limitations. I don't meen to lecture you but your endangering yourself. Living ruel makes it hard not to drive I know, but please be careful.

It sure sounds like fibro. I'm with Willow have you tried other meds? Your on some heavy hitters that may be causing you more trouble.
I'm really curious about your abscess as I spent 21 days in the hospital from a series of procedures that ultimately lead to two pelvic abcesses, drains inserted twice, sepsis, two blood transfusion just to name a little. I also had repeated groun abscess, FINEALLY a doctor put me on a low does of tetracycline for a couple of years and it stopped until we moved and my new doc. Shooshooed the idea. Have you had elevated wbc for years?

I hope you find this forum warm, and inviting (despite my little lecture. Lol) and useful.
We are glad your here.

 

[Trellum]

Hi there... just wondering if you have seen a neurologist and have had a brain MRI to rule out any kind of neurological issues already? If you haven't done so yet you should do it, a lot of yours symptoms sound like they could be originating in your brain. Better safe than sorry, back in 2014 I was diagnosed with a cm in my brain,k which explained a lot symptoms including the brain fog and numbness.

 

[Newbee]

Thanks for the support!!! Willow: your question about the meds, my doctor up my Lyrica does to 300mg twice a day which I do find relief but I find if I push myself the relief from the pills doesn't last as long as. The cotin does help as well.

Eyesup: regarding your concern about driving, I too has a son that I rely on to drive for me, I just didn't put it in my post because this eye pressure/stabbing pain is new and freaked me out....
My tunneling infection the many doctors I've seen have no idea what, why, or cause. Right now I'm closed up but feel like there's another pocket building up, but have a great female surgeon that seems to want to follis through to find out the reason. Unforunately I need to wait until another rupture in which I'd have another surgery and be bed ridden for around two months, depending on the size.
The pockets of infection start small and grow quickly. If they are deep it causes alot of pain and pressure. The best way to describe it is being 18 months pregnant....��
The tetracycline you were on, did you find no infection build up?

Trellum: yes I have seen a neurologist and had a MRI. Nothing out of the normal was found.

Today both my legs down through my feeit feels like my feet are badly swelling, it feels like my feet will explode when I walk.....my head fog is really bad, just typing this post I'm finding it hard to think of words along with spelling.
I'm waiting to see a rheumatologist to confirm fibro, my family doctor says he's convinced having other patients with similar symptoms. My head feels numb all over, my spine feels like a vise grip is at max grip.
I'm so glad for this site, and the chance to chat.....
Thank you again for responding!!

 

[oportosanto]

That's a problem with diagnoses, we do all the necessary tests and many times nothing out of the normal appears...

 

[Eyesup]

Well, I guess that's good news for the rest of the world that our sons are driving us around! Lol (hope yours doesn't drive like mine)!
No, I did well on the tetro. I think if I had continued when we moved I may not have had all these problems. But I'll never know now.
So you have to wait for it to rupture b4 they will address it? Can they not put a drain in? That sounds like a recipe for disaster. Have they have tried you on a long term low does antibiotic?
I get the "new symptom" panic button. This forum has helped me a lot ease through new problems.

 

[FenWoFon]

In this case when you're dealing with that horrible condition all you should do, and I know it is not easy to do but it is the best way to put eeverything aside and keep living our lives as we should, HAPPILY, you gotta become a stronger person, do not let that condition take advintage of you, brace up and be happy, no matter what, live like if there is nothing way more important than you being happy, this is your moment man, live it up!