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Posted 4/6/2009 7:54 AM (GMT 0)
White Beard,

You mentioned that your physical therapist did not think that sleeping in
a recliner is for the best.

What did the therapist have against the chair?

Pamela Neckpain
Posted 4/6/2009 6:20 PM (GMT 0)
Pamela

My physical therapist thought that to get proper and  adequate sleep you should be laying down! Because that way the body can fully relax and it is better for you and your spine! That might be true for someone with a normal back,  but someone with a normal back can stand up straight and in church kneel on the kneelers, I can not do either, I can't do any thing that makes be lean backward in any way! I can sleep on my stomach, IF... I put a stack of 3 or 4 or more pillows under my chest and stomach first so that I am, bent at the pelvis, so I am actually in a stitting type or bent over  position but on a different plane! My left shoulder is also dropped, and I can not keep it up straight!

 It is funny I can't tell you how many times I have flunked out of PT! I was going to aqua therapy, and it actually made me worse! and they told me not to come back until they fixed my disc, because all the therapy was doing is putting pressure on the nerve roots and causing me more pain and spasms! But the Docs don't want to touch the disc,(especially the thorasic ones) which gives me somany of my problems!

 Plus they all think there is something else going on, besides the bad disc!    I had been treated for Parkinsons for the last two years and now the specialist say I don't have Parkinsons and I have been  weaned off all those meds. But they do think there is something else wrong!  I can't tell you the number of times, and number of Docs that have told me they think I also have MS but that has never been confirmed, I see my new Neuroligist the end of  this month again, I am hoping that he might get some answers! This has been going on for many many many years!

White Beard

Posted 4/6/2009 10:15 PM (GMT 0)
White Beard,

I have had several doctors say Multiple Sclerosis. I know I don't have that. ( It's when
they are reaching.)

A neurologist and a GP thought I had Cervical Dystonia or Torticollis. (possible, but
not likely)

My pain doctor doesn't give me a dx. but thank goodness he knows it hurts A lot.

I read my MRI and it gives me the shivers. I did not want to pick it up. There is
no reason for me to know too much. I can't do anything about it. I would guess
that spurs cause most of the pain.

I crunch up in a ball when i'm in bed. There is no good posture there. In my
chair, I fully relax and I tip it way back so there's no pressure on S1.

Oh, I know what you mean about Aqua therapy. It didn't work out for me AT
ALL. For a couple of weeks I had trouble getting dressed. I really messed up.
My therapist was gung ho and he was determined to get me pain free in two
weeks. Another time I walked around in a pool by myself. The water was warm,
the moon shone down. After I got out, I quickly got dressed at then sat down.
I was in SO much pain I warned my husband that I might not live through the night.
Terrible. No pool for me.

A diagnosis of Parkinsons is a serious thing. Do you feel just a little put out that they
don't know if your have it or not.

It would be interesting if we all wrote a history of our doctor experiences. I had
one who would only give me a weeks worth of Vicodin at a time. Very expensive
to buy it that way. He thought I would do myself in if he gave me any more than
that. I guess neurologists aren't used to prescribing pain meds.

Post Edited (Pamela Neckpain) : 4/6/2009 4:18:28 PM (GMT-6)

Posted 4/6/2009 10:29 PM (GMT 0)
hey i am jumping in on this one- just cause i love you guys so much. my PT said that i SHOULD lie flat, but if i am more comfortable on my stomach then sleep is more important and to relax whatever relaxes my spine. i only did a few weeks of therapy myself i could barely move the next few days. i know what you mean....
btw, funny to say but i need to see a neurologist too, my PM thinks i may have ms as well..... do you guys get tremors you can't control? sometimes i just shake all over, twitching and what not. i was actually in the er not long ago with my appendix and having the twitches and poor nurse trying to find a vein, hit one on my hand -twitch- blood everywhere. omg i was so embarrassed. does that happen to either of you?
-your friend, shannon.
Posted 4/7/2009 1:50 AM (GMT 0)

Pamela & kttn251977

This new neurologist I have when I seen him the end of December, he done a thorough exam the first thing he did was he had me sit down in a chair with my arm and hands at my sides and then he sat down right in front of me knees to knees and he put his hands palms down on my thighs and just quietly ( he told me to relax and no talking or movement) sat there for several minutes, then he did the same thing with his hands on my arms, then he started the regular exam. He told me that I vibrate, he said that my muscles are constantly twitching or vibrating! OK ??? he also said he didn't think I had Parkinsons and he sent me to the Rush movement disorder clinic in Chicago, they specialize in Parkinsons and they agreed they don't think I have it either and I have been weaned off of the Senemet and Lodosyn that I had been taking 4 times a day for the past two years! This wasn't the only thing my old neurologist was wrong about! He had also screwed up on my Sleep Apnea treatment! But that is another story! That neurologist is nolonger my Doctor!

Anyway, I have balance problems, and swallowing problems, along with losing some movements, I will get periods when I will have a bunch of wierd symptoms, numbness and tingling in my extremitities and balance and walking problems and also swallowing difficulities, and some other things, they will last from days to sometimes weeks and then they will go away, ( but they always come back, some times weeks later other times months later or longer) but when they go away I will often be left with a deficit, of some type, as an example I can nolonger hold my arms straight out in front of me with my palms up, in fact I cant hold my arm straight out at all. I used to love doing sculpture, I cant do it any more because I can't hold my arms out to do the work! Also I get spasms, I get them in my hands, in my feet I get them everywhere, the insides of my thighs is a killer! That is why I take 25mg of Baclofen every 8 hours to keep the spasms under control! And of course the pain. When I have a bout with these symptoms, my pain increases unbelievably!

When I went to the ER a couple of weeks ago and they thought it was    my kidneys, the test came back negative and they then said it was probably my back, but during this time I have also been having intense numbness an tingling in my feet, and swallowing and gagging problems and some of the other symptoms I get, and my pain in my back has been unreal, I have been taking allot more percocet for break through. Is it all connected or related???? I don't know, but the symptoms are starting to go away!

A number of years ago  (8 or 9 maybe more) I had a MRI of my brain, the MRI folks said I had possibly had some mini strokes  my nero psyc Doctor said the same, but my neurologist at that time said he didn't agree! But he said he didn't know what those three spots were, but he was sure they were not important! I found out a week or so ago from Gretchen the moderator over on the MS forum that they told her that the spots on her first MRI was also mini strokes but it really was MS, now I am not saying that, that is what mine is, but it does make me wonder a bit???? I have allot of the same symptoms and I have had allot of abnormal test and allot of different Doctors have mentioned MS over allot of years! 

Over the years I have gotten worse, I now walk with a cane, bent over, if I ever got pulled over driving and was asked to walk a straight line with one foot in front of the other,.....well.......I can not do it!  nor can do the finger to nose thing!,  I can't do  either of them!  I will go to jail for sure! smhair   ( but not realy funny!  shakehead  )  It kind of scares me because I am not that old, I will be 58 in June, (I know my beard makes me look older,) but I have seen the changes in me and  it scares me! and I really worry, I worry that since I have changed this much, in the last 10 or so years,........what I will be like in the future??? I don't know!!! As of now no one has ever connected the dots and have came up with a firm diagnoses! They do know I have degenerative Disc disease and arthritis, and Chronic Pain,  and a couple of Doctors also say I also have Fibromyalgia, and a couple of other things! But no firm answers for this other stuff! One of my past PCP's said quite a while ago, "what difference does it make? Most neuro degenerative diseases are not curable anyway!" Well maybe he is right! But I would still like to know!

White Beard


Posted 4/7/2009 2:08 AM (GMT 0)
whitebeard, i have almost the exact same issues- swallowing, balance, etc. thats what alarmed my PM dr and he diagnosed the fibro. he thinks its ms but i need to see a neurologist. it comes and goes with me as well. i am on zanaflex which is a muscle relaxer i get in place of soma now- but it is a med commonly used for ms- from my understanding. i am also 32 and what i have read is that ms shows up around my age to the late 40s. (not sure of your age) but whatever it is sounds like we have the same thing. crashing your post again. just bored. hope everyone has a good nights rest this evening. Shannon
Posted 4/7/2009 2:39 AM (GMT 0)
kttn251977

There is no crashing here, I am glad to see your post, my symptoms actually started in the late 80's so I would have been in my late 30's then I was still in the military back then! I was switched from Baclofen to to Zanaflex but could not tolerate it! So went back to Baclofen! I see my neurologist the 29th of this month, and see what he wants to do next! I have posted over on the MS forum you might try looking over there too!
Good Luck to You Shannon

White Beard
Posted 4/7/2009 2:54 AM (GMT 0)

White Beard,

I wanted to pop in and write this post to you. A few years ago a friend of mine started having many different problems with things like balance, gait, tremors and other stuff. But the biggy was her vision was coming and going. She was referred to nearly every kind of specialist known to man in both Fort Worth and Dallas. One thing we are not short of here is drs. She went over to UT Southwestern in Dallas which is a big teaching facility. By this time her vision was totally gone for long periods of time. Well, after seeing tons and tons of drs no one could tell her what was wrong. Her Mother insisted her husband bring her to Tampa, Florida where she lived, she wanted her seen by a group down there that specialized in MS. Sure enough, she has MS, they were able to get her on the proper treatment and medication program and over time she got her sight back and she has done well. Oh, she may have a day or two of a little fuzziness, but that is much better than no sight at all. The drs down there found her a local dr here in Ft. Worth that communicates back and forth for follow-up care. She was seen by nearly 100 drs here, all specialist.

From what she was told MS is a very difficult disease to diagnose and can be missed so many times by drs. If you get to the point that you don't think you are satisfied and getting the answers you need, I will be glad to get you the name of the facility in Florida. I do know my friend had pure hell for one year with all the different drs and everyone standing around tapping their toes and scratching their butts, meanwhile she was blind as a bat at times.

I disagree totally with the dr and Pam about what we need to know when it comes to our health. We need to know these things and what is going on with our bodies, whether or not there is a treatment available or not. I am not one to settle for guesses or half witted opinions on whether or not I have a disease or an illness. When a dr starts telling me crap like that, that tells me he has no idea what is wrong or he is guessing.  I much more respect for a dr that will admit something is out of his area or he does not know and have him send me to someone that does. That has happened several times to me and I appreciate my dr being honest with me. We can never know too much as far as I am concerned. We have to be responsible for getting the proper care we need because sometimes the drs have no clue........Susie

Posted 4/7/2009 3:14 AM (GMT 0)
Susie, I live in Tampa and if you could pass the info to me I would be very grateful. There are so many drs and hospitals here, you never know. I have been fortunate in having a great PCP and PM dr that I never had in GA. Thanks for the post so now I can know a reputable (I assume) rheumy.
Posted 4/7/2009 3:27 AM (GMT 0)
Kttn:

Did you PT mean to lie flat on your bed or on the floor or on a hard mattress/

Pamela
Posted 4/7/2009 5:09 AM (GMT 0)
MS is currently on the table for me as well, although really the only symptoms that I have are eye symptoms, but my neurologic problems in my eye is very characteristic of early MS. My ophthalmologist mentioned it as a possibility, although a pretty rare/unusual one (if you take into account all of my symptoms, not just the recent neurological problems), a month ago, but I did see my neurologist & she said that the rest of my exam was fine, but it may be too early to tell & to come back this summer. Although around the same time I saw another doc - an internist, with a background in neurology - that said that he thinks that I DO have a variant of MS. I don't know what to think. But after today, I think that there is a stronger possibility that it may be MS. It's really scary to think about. Frankly I am terrified. I saw my ophthalmologist again today & the neurologic function of my eye has gotten significantly worse since a month ago. I did have a brain MRI in January & it didn't show any lesions, but that was before the neurological issues started. At the very least we are going to have the radiologist re-look at my brainstem, since that wasn't really the area they were focusing on before. There are a couple of things on table right now & they are all really bad, but I think MS is the worst.

I'm sorry that you guys are going through this as well!

Skeye
Posted 4/7/2009 5:33 AM (GMT 0)

straydog any info you can provide I will gladly accept! E-mail meif you want. One thing I like about this new neurologist I have is he admits when he doesn't know something, the last time I saw him and he sent me to Rush in Chicago, he told that my condition was way beyond his area of knowledge, but he also said, but I he wasn't afraid to refer me to the people that do have the knowledge! So that give me some hope! You know a long time ago I used to have vision problems with my vision going dim, and it was often just on one side! That was back when I was still in the Air Force and that is when I was first told that it might be MS, but back then nobody ever followed up on it, and they didn't have MRI available like they do today! I still have the visual disturbances, ( Jagged curved flashing lines in the upper right quadrant of my vision) I had two of them last week, they last anywhere from a minute or two to 10 or 20 minutes) I get them every now and then,  but they do seem to happen more when I have all those other symptoms! but the Docs have always told me they are migraines without the head ache???

skeye I thought I seen your post over in the MS forum?

White Beard

Posted 4/7/2009 5:41 AM (GMT 0)
pamela, never really specified. i even asked about buying a sleep number or tempurpedic bed would help. she said that choice was ultimately mine but probably not. so i assume lie flat when i slept, but telling her lying on my belly seems to help with the pressure- so she said to do what makes me comfortable that sleep was far more important than comfort. as you know i am one of the insomniacs here... even with all the meds and sleeping pills. sometimes i try my side (though i have heard thats how you get bags under your eyes) so i try not to do it very much. lately i have taken to stacking a pile of pillows against the headboard and sleeping almost upright. like an L shape. without sleep as we know it causes madness to a degree no one can understand unless they have been there. no one believes i can go 3 days without a bit of sleep (and i am clean from illegal drugs & even caffeine) except my hubby who watches me go through this. i often sit and wonder how on earth did people 300 years ago deal with pain? i'm a history buff and i think about like when henry the eighth had his bad fall & the unhealable wound on his leg, leeches.... uuuuuugggghhh. makes you wonder though 500 years from now what people will think of us? how will science advance? (provided there isn't a war/global warming that ends things before then).
Posted 4/7/2009 6:14 AM (GMT 0)
kttn: Oh, as far as health care goes, I believe we are in the dark ages.
There are three of us right here before you who have the possible dx of
Multiple Sclerosis. (I think for me it highly unlikely, but the doctor felt he
had to say SOMETHING)
I had a beer tonight. I had been in so much pain all day I was going nuts.
The beer worked. I well know the dangers. Maybe back in time they used
"herbs" and beverages fermented from berries. (I'll just bet they did) Every
body died young. That helped the pain problem, I spoze.
I'm going to use pillows in my chair and improve my posture there.
Posted 4/7/2009 9:04 AM (GMT 0)
mmmm i cant sleep tonight, and nothing is helping me fall asleep. i have just watched a movie and 3 episodes of chuck. lol. i always thank about the part in mansfield park when jane austen said that "she has a heavy dose of opium daily" wouldn't it be nice to have a dr prescribe you a vial of liquid opium and you are on your own with it. and please don't anyone take it the wrong way, i would never take anything illicit for pain. and i dont judge you over a beer, your an adult. i have had cocktails before and i keep it to maybe 3 drinks a year. i'd have a delivery truck of alcohol of i knew it would help. hope you are fast asleep.
Posted 4/7/2009 9:10 AM (GMT 0)
It wore off long ago. But it did do something. It relaxed my muscles. I
think they got all tight over the process of just living. I'm ok now. Not perfect,
you understand.

Ok... I'm taking a Xanax and a Morphine and will probably sleep - a vial of
liquid opium would work better and it would no doubt be dreamy.

We'll be edited. lol but for now lol. What r u doing up at this hour?
Pamela smilewinkgrin
Posted 4/7/2009 4:36 PM (GMT 0)
i meant no harm in the post, be if it needs to be edited i understand. i just couldn't sleep. i did see you online but thought maybe you drifted off with your laptop on. is there a way to IM someone on here if we want to? that would be fun for the sleepless nights.
Posted 4/8/2009 4:49 AM (GMT 0)
Whitebeard,

Yes, I did post on the MS board a couple of weeks ago. I was hoping someone there might have had some kind of similar experience or something to say.

Skeye
Posted 4/8/2009 5:00 AM (GMT 0)

I thought that was you skeye I read your post, I have also posted over there and the folks over there were very kind and helpful! I do hope you can get some answers! This medical Limbo land is the pits!

White Beard

Posted 4/8/2009 5:02 AM (GMT 0)
Thanks! Same to you! I agree completely. There is nothing more frustrating that not knowing...

Skeye
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