Scarier situation than I ever imagined!

[Heavenjumper]

I am coping with my recent fibro diagnosis pretty well, but have found myself in a situation far scarier than I ever imagined lately. Six days ago, I woke up with no use of my left arm or leg. A trip to the er cleared me of a stroke and the doctor said it was probably caused by the fibromyalgia. I regained use of my arm by the end of the day, but still had no use of my left leg. It's been 6 days now, and I've gained the ability to turn my ankle in and out and raise my knee an inch or so but still can't fully use my leg. I went to my primary doctor about the issue, but she looked at me and said "you said it's getting better..." as she walked out of the room! I was furious, I've been using an old broom handle to help me walk and my doctor didn't seem to care. Has anyone else dealt with loss of use of a limb, any ideas on when/ if I may get use back? I'm scared out of my mind that I won't get function back in my leg.

 

[diamond]

It doesnt sound like fibro to me although i get extreme weakness and find the pain and mucsle weakness combined means i cant stand for many minutes and some days can just about brush my teeth and collapse back into bed and my arms are often too weak to do much except absolute essentials of washing and making an easy meal.

But what you describe ....i'm not sure can you give a little more detail...if you cant raise your knee and inch but can still walk a bit with a stick i'm a little confused?

Maybe time to get a second opinion from another doctor....try not to panic as it is improving but sounds like you need more help from someone who can really explain and maybe some physio ...what about asking to see a neurologist as it sounds to me as if you are being fobbed off and left all at sea with no real idea of the cause.

What level is your fibro normally...are you usually fairly active?

Take Care and I am sure there is every chance you will get much better....just dont let the doctors dictate or belittle your concerns...i know thats hardwhen you feel vulnerable...if possible take a relative or friend to help fight your corner.

 

[Heavenjumper]

I'm not sure it is fibro either, and I think that's what scares me most. I know the weakness you're referring to pretty well lately, especially in the last week. I can only do so much before I feel absolutely exhausted, and walking in my current state takes a lot of energy out of me too so I can't go far or stand long before I have to sit and rest. I can walk with the stick by stepping with my right leg first, then using my hip to pull my left leg forward and using the stick to help with balance and weight bearing while I quickly nice my right leg forward again...kind of hobbling/mostly dragging my bad leg around. When I sit on the bed with my legs in front of me though, I can't make my leg move more than raising my knee an inch or so and turning my ankle inside or outside as well as rotating my leg through rotating my hip. It's a very weird lack of use, but I'm very ticklish on the bottom of my feet and if someone tickles my left foot, I can feel it but I can't move my leg to get away from it.
I just got the fibro diagnosis last month and haven't really been treated for it specifically. I also have been diagnosed with carpal tunnel, degenerative disc disease, osteoarthritis, and bone spurs in my lower spine. I did get in to see my neurologist this morning (who gave me the fibro diagnosis) and he's sending me for more tests, physical therapy, and seeing me back in 2 months unless something changes. I'm thinking that I'm going to call my primary doctor (not the one in his office that saw me this week though) and all for a referral to a doctor that can confirm the diagnosis and actually treat it.
As far as my usual activity level, until the issue worth my leg, I worked full time and did whatever I needed to regardless of how much pain it caused, but the pain has been increasing substantially in the last couple of months. I have a lot of determination not to let things slow me down, though lately that determination only gets me so far. I'm hoping the new tests will give an explanation and a solution can be found. Sitting around the house not being able to work or do much of anything at all is driving me insane!

 

[TipBill]

Do you have any back problems? Have you been looked at for degenerative disc disorder? I suffer from that and when I get what I call an "attack" both my legs go numb and I have to walk with two canes. Thank God I haven't had one in a while cause they can literally bring your to your knees. I can't explain the loss of feeling in your arms though. I know what you mean about doctors. I despise them with a passion but they are a necessary evil. I had my shoulder replaced last year and yesterday I went in for my year checkup. The surgeon who originally did the surgery moved to New York in July so I had to find another one. Anyway I was in the room waiting on the doctor. All of a sudden the door open and the doctor and 3 other people walk in. So with me that's a total of 5 people in this little bitty room. They were looking at my Xrays and they all started laughing. They were saying something about how the surgeon put a lot of cement in my arm and saying "boy that must hurt to walk around with all that cement in your arm". They weren't even talking to me. Then the doctor said goodbye and they all left. No follow up treatment, no cortisone shots, no nothing. I just sat there gob smacked. I am really in pain and they are laughing about it and doing nothing to help me for it. I was told by my original surgeon that it could take up to 18 months for the pain to go away completely so I have 6 more months of pain on top of the year of pain I have already been through.

Sorry about rambling about my problems when you are looking for answers for your problem. Hope you find them.

 

[Heavenjumper]

I have been diagnosed with degenerative disc disease as well as bone spurs on my spine, but I never thought of that potentially being related to the cause of this. I usually have significant pain through my lower back and leg on a bad day, but never had anything like this before. I got use of my arm back within the day that it first happened, so who knows what caused it. I'm sorry to hear you're still in so much pain from your surgery. My mom had her shoulder replaced due to damage from RA and was fully recovered within 3 months. They never gave her an 18 month time-line. It sounds like you need to continue your search for a new doctor to treat that shoulder though, I would've pitched a fit about that visit!

 

[moe1959]

Hmmm, Im no Dr, But have you ruled out M. S. ?

 

[Heavenjumper]

That's what scares me, the thought that it could be MS. The neurologist hasn't brought it up as a possibility, but he's the type of doctor that won't say what he's testing for until he has the results to confirm it. I'm really hoping that's not the case though, but I had the x-rays and tests done today that the neurologist ordered so I guess we'll find out soon.

 

[Eyesup]

Hi heavenjumper, I just thought I would throw my two cents in. First of all you may want to look for a doctor that wants to actually practice the art of healing rather then the art of arigance. Secondly prior to my FMS diagnosis I too had been to the emergency room for pain then numbness or complete weakness in my left side. My reumy told me it was probably FMS but a few months later I learned I had tree bulging disks and one herniated in my neck. At which time a neuro surgeon told me the numbness and weakness was more likely from a nerve(s) being pinched. I declined on the steroid epidermal but I have cut out as much inflammation triggers as possable and I have seen a huge improvement. If your back has Spurs and such you may want an MRI/CT to rule out pressure on any nerves.
Let us know if you get a clear cause.

 

[Heavenjumper]

When I started physical therapy on Friday, I was fortunate enough to deal with a therapist that has previously worked very closely with fibromyalgia patients a lot. He believes that this issue is likely a nerve being pinched somewhere. On the upside however, whatever the reason for it, I am beginning to regain use of my left leg back! It's still not 100%, but it's improving so I'm happy with that. I haven't heard anything on the results of my latest tests though and am contacting my primary doctor this week about getting a referral to a rheumatologist now that I've done some research on the ones in my area that take my insurance. Thank you all for the support, this group made this ordeal easier to handle without stressing out too much.

 

[Lana]

I get so angry at these Doctors that can't even give us the time of day!!! You lost feeling in your leg and you are using a broom handle to get around and that Doctor just walked out the room on you! WOW the things us Fibro people have to deal with is so amazing to me! SHAME ON THAT DOCTOR!!!!