My horrifying story

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perle
New Member


Date Joined Jul 2010
Total Posts : 3
   Posted 9/4/2010 1:07 PM (GMT -7)   
 One day I felt tired, I wound up staying in bed for the next 2 1/2 months! I became so weak I couldn't hold my head up. My head was really hurting. My lower back felt like a firework show of shooting pain, continous spasms and horrible buning pain which soon occured from my neck down, except the front of my torso. Every day was a nightmare of pain! Also achiness, sometimes decreased sensation, sometimes feel pain from touch, joints hurt, and numbness for hours. My body and head can bobble like an infants, my knees buckle and I have very little stamina. My calves and knees can feel so tight and contracted. My feet and legs are swollen. My motor skills were bad and I still do not walk right. My thinking skills have declined. THis has been going on for 3 1/2 months. I've had a ANA, Cat scan and back X-ray. My  neuro says the Gabapentin I'm taking is all that can be done. I take pain meds. all day. I want to know what's going on with me and if I'll ever have a normal life again. I think Dr.'s should do more. I want to know if I'll be ok. Do you have any ideas about what's going on with me?

solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 9/4/2010 5:48 PM (GMT -7)   
Hi perle. Wow it sounds like you have a lot of really bad stuff going on here. Do you have a diagnosis? We aren't doctors here so can't really help you with that aspect of your problems. The people here though are very supportive because we all have chronic pain of some type or another and can related to the fear and frustration it sounds like you are feeling. That is very understandable with all your symptoms. I know it would freak me out. You said you think the doctor should do more. I hate to say this but they are just human like their patients so don't always know all the answers all the time. They are not infallible and do make mistakes. Have you gotten a second opinion? That might be a really good idea especially since you sound unhappy with your current dr's plan. I truly hope that you can get this thing you've got going on under control very soon. That isn't going to happen by chance though so maybe a new dr is in order. I hope you are able to get some sleep tonight and that tomorrow is better than today. Lisa
If I can laugh at it, I can live with it.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2283
   Posted 9/4/2010 6:11 PM (GMT -7)   
Hi Perle,
I don't know what could have caused you to be so tired, but the rest of your issues are probably caused by being in bed for so long. I know when I was bedridden with pain my muscles got extremely weak -- some of them were atrophied to the point where my doctors were not sure I would regain use of them. Which made it hard to do much of anything & made my pain even worse than before. I had to take on a very slow PT plan to build back up some of my muscles. It took months to be able to do much of anything, but with effort and patience I did get better.

Right now I've been working on strengthening my upper back so that my neck doesn't hurt so much. I tried PT, but it was too, too much. So I'm going much slower & doing it on my own and it is making a difference. Little by little I'm getting stronger & more able to hold up my head without extreme pain.

I would suggest trying to find a pain clinic that will take a multi-faceted approach to treating pain (which very well could have been what was making you so tired). They should be able to combine meds & PT & massage & other options to help you rebuild strength. Then if at the end of the day the pain is managed & you increase your strength and still have extreme fatigue, maybe check with your PCP and a second neuro to find out what's going on. They could possibly do a continuous EEG (SUPER expensive -- I'd try everything else first) as a last resort to see if there is some kind of abnormality or sleep issues.

take care,
frances

Nitemare
Regular Member


Date Joined Aug 2010
Total Posts : 26
   Posted 9/4/2010 6:29 PM (GMT -7)   
Well Pearle as Geckogirl has already stated we are fellow sufferers that can only understand and feel for you as to what you are going through. I myself suffered with severe Migrains most of my life as well as back pain, after trying many different meds I was given Sibellium and my headaches finally ended at 40 years old. Only to be replaced with my back problems, after 4 surgeries I am given up on and fed a plentiful supply of Percocet and Fentynal patches to try and control the pain.
So you see you definitely are not alone in your battle. Now at 56 I am once again plagued with headaches, now in the back of the head as well as Ulcerative Colitis which started just around 10 years ago. With all the meds I take now for pain I am unsure how I feel any new pain at all, so Pearle My Dear you are not alone in your struggle to be free of it. Your particular symtums I have no clue what is ailing you and I thought through my vast knowledge of headaches from reading has left me quite bewildered as well as sad that you have to go through this, I sure hope not alone but you certainly have my ear for moral support. Keep a paper and pen handy, whenever you feel something different even the smallest insignifigant little thing write it down, you never know in the scheme of things it may shed the final piece to the puzzle. Try and look on the possitive there are a lot of people worse off than you or I

stingray
Regular Member


Date Joined Oct 2009
Total Posts : 175
   Posted 9/4/2010 11:38 PM (GMT -7)   
 
Hi Perle
 
Like everyone else I can only offer some suggestions based on my own experiences. I suffer from chronic back pain following a back fusion.  Since than I have developed other problems as well. Anxiety being one and poor circulation being another. My legs and feet swell and have become painful. So like most people I have decreased my activity level to barely nothing. This however just seemed make the problem worse. I also have problems sleeping and always seem to be tired. I have discovered that increasing my activity even though it hurts has had some positive results. We seem to get into a snowball effect. We naturally stop when something hurts and try and deal with the problem that way. However in my case that seemed to be the exact wrong thing to do. When it comes to muscles it's really a use them or lose them kinda thing.
I agree with others that getting another opinion might be a good idea. Even a physiotherapist my be able to direct you in some low impacr exercises that will help in your road to some recovery.  It's been my experience that doctors sometimes don't follow things through to the end and simple offer up pain meds or other meds which doesn't help heal the oringinal problem.  The most important thing is ..don't give up. This site is great for imformation and support you'd be hard to find anywhere else. Good luck Perle...Try and stay positive.

MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 9/5/2010 4:24 AM (GMT -7)   
  Hey Perle , Welcome ! Hang in there , we are glad you have come here and please feel free to post what your feeling and let us support you .I know the feeling of an undiagnosed illness , its very frustrating I know , you don't even know what to do to help yourself and thats tough . I would list your symptoms and everything you've been feeling and the meds you've been taking so you'll have an accurate record . Then its a matter of finding a doctor who can help , please hang in there , your worth any trouble you need to go through to get your answers . It may take time so keep us updated and we'll be there for you . Your Friend Mikel
HIV+. meds - epzicom, Kaletra . oxycontin as needed , indothemiacin . hip replacement surgery done !!! Dealing with healing now !!!

Áthas
Regular Member


Date Joined Aug 2010
Total Posts : 55
   Posted 9/5/2010 4:57 AM (GMT -7)   
Hi Perle, sorry to hear what you're going through. That must be horrible. Can you get physiotherapy? A former teacher I had when I was still going to school had some disease when she was pregnant and while the baby took up the ressources she had left and miraculously stayed healthy, she became so weak she also couldn't lift her head anymore and could not even eat by herself. Never learned what it was, but you really should insist on the doctors doing what they can to find out what is wrong with you. Physiotherapy might help, but I hope they'll find out what's wrong and how you can get better.
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