Falling down

[hyphenate]

The doctors attribute the completely lack of stability in my legs, the loss of balance, the muscle spasms, the total and complete lack of strength and the constant falling to the diabetes, but I'm quite sure it's from something else.

The worst part, besides the never ending pain in my lower back and legs, is the falling. I now fall an average of three times a week, slightly more than 1/2 at home with the others outside the home.

Imagine falling and not being able to get up. That's how it is right now. There is no strength in my legs, especially my thighs, and unless I can find another way to get up, I would remain where I fell until someone came to help me. Outside of the house, that works out okay--I use a cane right now, and if I fall, someone always helps out. In the home, it's different--there is no one here to help, and once I stayed on the floor, just inches from my chair, for almost an hour before I found a way to get up. I find if I can crawl onto something like a footstool, I can then turn around while on that stool and sit down, which gives me a better way to get up. It's because of the height--being on something that gives me less dependence on my lower extremities works to get me back up again.

I'm sick and tired of the falling though. Over the past year and a half, the progression of weakness and clumsiness has been very quick and very scary. And while the doctors claim it's all because of neuropathy, I think there are other causes too, like the herniated disk in my lower back that no one wants to remember is there, or some part of the fibromyalgia or CFIDS. They also claim once my diabetes is better controlled, I will gain back use of my legs and lower body, but I can't count on that.

If things DO continue to get worse, I am going to request either a wheelchair or a scooter. I have been through the ringer with this shit. One thing I managed to change was my primary doctor--I got rid of him and I will be so happy if I never see him again. On the other hand, my new doctor doesn't like to prescribe pain meds, so now I'm suffering endlessly and agonizing horribly. It's not like I'm addicted to the pain meds--I took 1 tylenol with codeine at bedtime every night, which got me through the night and with less pain in the morning. And right now, the multiple sites of pain--from my upper back to the lower back and my legs and now my arms--ache all the time. I'm seeing a chiropractor, but I don't really think they're doing me much good--they don't seem to be doing a whole helluva lot on me at all, and I'm ready to just say forget it.

My new doctor gave me a prescription for Ambien, but that's useless. It helps me fall asleep, but that's all. I'm still awake exactly 5 hours later, with no relief in site. AND when they wanted me to go up on the dosage, I ended up with severe diarrhea and complete drowsiness that had me sleeping almost 24 hours in a row. I'm ready to quit that now, and am sure I would get addicted to the sleeping pill faster than I would with the pain med.

I'm only 51 and this sucks. I'm not ready for a complete check-out yet, but if this continues the way it's going now, thinking about it makes it seem more feasible all the time.

[Warpy]

1. You sound like you're ready for the scooter NOW

but see if you can get a referral to physical therapy. If they expect your legs and balance to improve, physical therapy will do it for you. If you are beyond the possibility of improvement, physical therapists will alert the doctor and you'll get help paying for that chair/scooter.

Falling is not good.

[hyphenate]

5. Thanks

The follow-up with PT is on the 27th. Hopefully it will give me the incentive to keep going. :)

[mopinko]

2. agree with warpy. falling down is not good.

and if you are having symptoms of fibro, etc, they should treat THAT apart from the diabetes. most people take a muscle relaxant, at least at night time. i'm sure the cramping and stiffness doesn't make walking any easier.
also, the newer sleep drugs, like lunesta, work longer. i started taking some melatonin recently, (also taking ambien) and that definitely has made my sleep more peaceful and restful.
i think above all, tho, demand better pain control. finding the right drug with fibro, when so many of them have a paradoxical effect, can be hard. but it is not impossible. chronic pain gnaws at your mood. they need to do something.
docs- :banghead:

[hyphenate]

6. I'm of the mind that CFIDS and FMS

are two different manifestations of the same illness, and depending on where I am in my life, I'm either suffering extreme fatigue or ultra-pain, or at some times, both.

If the instability in my legs is from the neuropathy, supposedly it will get better when my glucose level levels out. I don't believe that all the problems I'm having are neuropathy, though, but--we'll see.

I've been so frustrated with doctors over the course of several years that I can't get comfortable with any one of them--I won't place trust in any of them until they've proved their worth to me. The only one I feel relatively comfortable with after only one meeting is my new diabetes doctor at the Joslin Clinic. His methodology is so thorough that it was a pleasure to see him.

As far as the pain is concerned, I'm going to ask my new primary care doc to give me a referral to a pain management doctor. If there is some "better" way for me to manage the discomfort I have, so much the better.

[siligut]

3. You are only 51, you need more help.

I agree with Warpy, falling is not good.

I would so much like to see a good solution for people when they are in pain. Getting your diabetes under control is something you have control over and may actually help, though it won’t do much for a herniated disc.

There is a medication, milnacipran, which has been successfully used in Europe for fibromyalgia. It helps with the pain and insomnia, it is considered to be an antidepressant and has the dynamics of tricyclics and serotonin re-uptake inhibitors. Cypress Pharmaceuticals has it in phase 3 trials in the US, it should be available soon.

Until then, talk with your MD about giving you prescriptions for both meds, a tricyclic and SRI, layering meds this way is what we see working for people. Also ask about Darvocet for pain, it is considered to not be physically addictive.

If you go to physical therapy, check into anodyne therapy, if you have neuropathy, it can be very helpful.

[Warpy]

4. Tramadol (Ultram) is available in the US, is generic, and is

one of the medications on Wally's list of four buck prescriptions. I just started on it after about 16 years on Tylenol #3 and the difference is like night and day. The pain goes away without that damned opiate fog rolling in. It took me a year to get it, years of reading studies about how superior it was to opiates on fibro. The cheap prescription price finally convinced my rheumy.

It also is a mild SSRI, so it helps from that angle, too.

[hyphenate]

8. Unfortunately

Ultram is not an option for me. I was taking it about 5 years ago, and I was constantly hallucinating. After I stopped taking them, the hallucinations went away. One disturbing one happened in the middle of the night when I awoke to see a "ninja" standing over me! The most popular hallucination, though, was seeing mechanical "bugs" all around the room when I turned off the lights. It was eerie. The two weeks after I stopped included full body apparitions floating around. Definitely NOT a situation I was happy to go through!

[hyphenate]

7. I'm already on both

With the fibro, I've been on amitriptyline for 13 1/2 years, and I'm on Effexor XR for depression.

I'm also on cyclobenzaprine for the fibro as well, for over 10 years. I think I've built up tolerance to some of these meds I've been on them so long.

Someone suggested mobic to replace the naproxen, and another suggested skelaxin (sp?) as well. I don't care--I just want to feel normal again--whatever "normal" is.

[hyphenate]

9. Follow-up

Yesterday, the 6th, was not a good day. I fell three times, almost 4. The first at home when I lost my balance and fell just inches from my chair. It took me fifteen minutes to get up.

The second happened at the hospital where I had an appointment. I had just gotten off the elevator and took a fall right outside it. Thankfully, there were lots of people around, and they helped me get up. An orderly had a wheelchair, and put me in it. I stayed in it until I had to leave a while later to make it to a second appointment in another building. It was good to have enough people around to help, and I gave up any embarrassment I might normally feel awhile back--if I fall, there is nothing I can do about it, so why be embarrassed about it?

The third happened when I got home again, and again, it was loss of balance. The problem at home is that there are parts of the front room where there is nothing to hold onto. So if I suddenly feel my knee buckling or losing my balance, I fall. I told my friend Steve (who owns the house) that I was going to install handrails all around the house so I can grab something. I was only half joking. That time took me a lot longer to get up because I was "stranded" without anything close enough to help prop me up.

The fourth was heading down the steps to get to the cab taking me to my hospital appointment--my knee buckled on the second step down, but thankfully, I went backwards, so I sat down on the step. I was able to get down without further incident.

One of the doctors I saw yesterday said that the odds are against me at this point--one of these days I will hurt myself more than I have so far. I agreed--so now we will see what happens next. I'm losing any and all incentive to extricate myself from this mess.

And today I have so far paid the cost of yesterday's misadventures--I've been so fatigued all day that I spent much of it in bed trying to recover. And the front of my thighs is in such pain that I'm shuffling around instead of trying to walk any better. It's like if you get too much exercise, how your muscles ache. I wouldn't call my spills "exercise" by any stretch of the imagination, but I suppose my body doesn't know the difference.

[cutlassmama]

11. I have a roling walker with a seat, which is really nice

I don't fall as much with it. A simple cane was not enough. I have the same issue as you with balance. I'm in my late forties and have back and knee issues. I also have an electric wheelchair for long trips. It gets to point where you have to get these items or fall. I used to be black and blue from bruises. I have also gotten a cell phone that I carry with me at all times (in my pocket) so I can call the Fire Dept. if I fall in my home. They will come pick me up, at no charge. Good luck to you.

[ThomCat]

10. I had to go from a cane to crutches

because I was frequently losing my balance. Perhaps that is an option you can consider.

I found that my muscle relaxant puts me to sleep faster and more safely than Ambien. Ambien was giving me halucinations and I found that I was sleepy the entire next day. It's amazing the the sleep-inducing side effect of some meds can be stronger than the main effect of sleeping pills.

Whatever you do, I hope your doctors take this seriously and find some options that work for you.

[Warpy]

12. I joined you all in kissing the pavement last week

more a function of poor eyesight that failed to pick up on irregular pavement than instability from fibro. The latter undoubtedly made it more difficult for me to catch myself, and I went down hard on one knee.

I can bear weight, albeit painfully, and it looks dreadful. I've been spending much of my time with two blocks of frozen tempeh lashed to it via an old abdominal binder, and it looks as though it isn't going to be arthroscopy time this time. In other words, the major blow was to my pride.

However, the doc wants me to consider using a cane. At this point, I'd rather fall once every 10 years (the usual rate) than have to haul around one more piece of adaptive junk. Besides, my wrists are worse than my legs and I don't think I could tolerate using it properly.

When my legs finally do go, I will be getting that scooter. With any luck, I'll be living in Mexico by then, and it won't cost me a zillion dollars like it would here.

[fudge stripe cookays]

13. I'm sorry hyphen!

Have you seen a neurologist? This sounds like MS, which I have.

Are you having any numbness anywhere? The sluggish legs and numbness are usually dead giveaways. An MRI or spinal tap can sometimes tell them definitively if you have any brain lesions that are affecting your balance and such. Then at least they could put you on steroids or one of the interferons to stop any progression from continuing.

My legs had been especially sluggish with mine, and I was starting to worry. So my new doctor up here put me on a new drug, and I feel like a new woman.

PM me if you need any support and think this might be the case.

[unapatriciated]

14. Were you definitely diagnosed with fibromyalgia?

Muscle weakness in the lower extremities are symptoms of many different Autoimmune Disorders with just as many different treatments . My son has Dermatomyositis and that was one of his first symptoms. He also had trouble getting out of low chairs, before he was diagnosed he could not lift his arms over his head and it was extremely painful for him to be touched or move. Unfortunately with fibromyalgia and dermatomyositis it is a long and painful struggle but there are medications that help control the muscle weakness and Physical Therapy is a must. Push your doctors to do a complete blood work up and a muscle biopsy.


Hopefully by now you have a better diagnoses and are doing well.