help

Hi OUCH9030,

Sorry you are going through alot.  You are very young but you are not alone.  There are other young fibro sufferers on the board and hopefully they will help you.  I am over 40, was always active when I got fibro.  I can't take any of the traditional meds because of bad reactions but the one thing that does help is excercise.  I know many off us when we are flaring done't want to hear that and say how can I workout when I feel this aweful but many of us take little steps.  A walk down the street, then a little further etc.  Light stretching or yoga.  Do you like any sports?  

Also moist heat.....the bed buddy is good for that.  Or some people make their own.  Rice is a tube sock and then microwave for 15-30 seconds at a time until warm.  Put that on your back or achey spots.  Take time and look around here...there is alot of info on fibro 101.

Take care,

Kathy

Hi, and welcome!  I'm so glad you found us and joined in.  You are going through a lot for such a young age.  I'm fortunate that I can take Ibuprofen.  I always take it with food so that helps with any stomach upset for me.  Same with Tylenol.  I do take a couple of supplements that help with pain and fatigue.  One is malic acid/magnesium supplements and the other is vitamin D3.  These have helped me and others on the forum.  You might ask your doctor about this.  Be sure to read Fibro 101...the second thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good links to start with are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  You will learn a lot there.  There are links about the vitamin and supplement I take and how they work in the body, too.  Knowledge it power and we do have to be our own advocates with this illness.

 

In Fibro 101 there are links to a pain journal and pain charts that they use in hospitals.  You might want to keep a journal and register the pain you have when doing things.  This will help your doctor understand better what you are going through.  Perhaps you don't need all that you are taking or maybe there is something else that will be more effective for you.  It's worth a shot.

You do have to keep moving with fibro.  If you sit or lay too much  you will be stiff as a board.  I do the gentle stretching exercises quite frequently throughout the day that are found in Fibro 101.  I also walk and swim daily.  These are gentle exercises that do help with the pain and fatigue.  Yoga is another good one.  You are young so there might be other activities you are able to do with some comfort.  

I find that a gentle massage helps me, too.  I see a massage therapist once a month.  I wish I could go twice a month but that isn't possible for me. 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from you soon!

Sherrine 

I think we were typing at the same time.  Please go back and read the long post I wrote you.  I feel so badly that you are going through all of this.  It's horrible.

 

Sherrine

Hey OUCH

You will not like what I say at all, but take it from a pain clinic survivor it is the truth. Science has backed this up. The more pain meds you take the worse your pain will be. Your brain starts perceiving pain relief as pain. Paradoxical, but true. Oxycodone is the worst. But, we are all different so I don't want to preach. If you could get down to hydros, it might help.

You said prednisone may thin bones...have you seen a orthopedic doc or a neurologist? It's such a shame for some one so young..have they done tests for muscle weakness, or bone scans? Those could add greatly to pain.

As for exercise, I used to read this forum and think "these ladies are WALKING! Their fibro couldn't be as bad as mine. But I sit in my chair in the am witha 2lb spaghetti can and do upper body exercises for 4 minutes. I think anyone could do that. Remember, if you don't use it , you lose it.

Welcome to the forum and I truly hope you find some answers soon.

Maggie

THanks bayoub2, yes I'm fully aware of that paradoxical fact. It sucks, because I just want the pain to go away and be able to do things I see other people my age doing. I can't even go to the mall because it tires me out and the walking hurts. This is no life at all. tramadol, hydros they don't do anything for me, hydros sort of do but I have to take an exorbitant amount. I am fully aware of everything about oxycodone and know the risks and so on. I can tell you in my little over a year on it, admittingly I am dependent, however in no means what so ever "addicted" I have to take 2 at work and then I try to just take 1 when I'm at home, but a lot of times I have to take the 4th. The soma 350mg helps at night actually, Even just laying in bed hurts and I constantly have to change positions because every position my back hurts, it's like a nightmare before I even fall asleep every night....as far as the 2lb spaghetti cans, sorry to be blunt but I don't see that helping me. My job alone takes everything I have out of me. Yes I have seen an orthopedic doc and by looking at my feet he also agrees I have osteoarthritis. No I have never seen a neurologist....No test for muscle weakness besides my trigger points and what not....My rheumatologist wanted to do a bone density test for me, I know they are costly, and at the time I had amazing insurance blue cross blue shield federal. They kicked me off because of my prescription history, conditions and due to my age!!! If they only knew what I was really going through. I tried to get insurance through just regular blue cross blue shield but was denied again. So a friend of mine told me about a new program in North Carolina called inclusive health. Which is for people that have been denied for preexisting conditions and so forth. So hopefully I will have that soon. I've even been told I have allodynia, but I don't believe that.

Have your doctors every prescribed physical therapy or water aerobics?  Both of these would be good for you. 

 

Yes, prednisone will thin your bones.  I'm dealing with that now.  My back also hurts badly at night.  It's like someone beat me with a baseball bat but I now have a pillow top mattress with a foam egg crate on top of that and a fiber bed on top of that!  This helps keep the bed softer but yet firm for my bad back. 

 

Below are a few things that have helped me with lower back problems.  I don't have that very much anymore.  My back pain is in the middle of my back, my shoulder blades and along my sides.  These things might help  you, too.

 

First of all, I do not sleep flat on my back because it makes my back hurt more.  I don't sleep on my stomach either.  I sleep on my sides with a pillow wedged behind my back.  This way, I can partially be on my back but have support.  That helps me.  I also get out of bed using a cane.  I roll on my side, draw my legs up in a sitting position so the legs are actually hanging over the floor, and then I push off with the cane.  Gravity will bring your legs down and you will be pulled to a sitting position without using your back muscles.

 

When getting in and out of a car, sit on the seat with your feet on the pavement.  Then, either using the seat or the steering wheel, swivel your feet into the car while keeping your back straight.  I buy cars with leather seats because they are slippery.  But, when I rent a car and get cloth seats I had to come up with another idea...and I did!  I get a garbage bag and a towel.  I lay the garbage bag on the seat and the towel over it.  Then I do the above.  The garbage bag and towel let  your rear end swivel like you were on a lazy susan!  LOL  Just reverse the above to get out of the car.

 

Don't use your back muscles when you are lifting things up.  Use your legs instead.  By doing the above things, my back rarely hurts me now.  I hope these suggestions will help you, too!

herrine

To Ouch: I also live in NC.Could u tell me more about this "Inclusive Program" you mentioned? I've not been
turned down for any pre-exsisting conditions(so far) but I cannot 4 the life of me find a dr. who will help.My
PCP fired me after being my dr. 4 over 12 yrs. because we got into it about pain management. At a loss as 2
what 2 do now.Do u live in NC ? I live in Cabarrus County.Thanks!

I eat fairly well actually and that's what's confusing about my metabolism issues and the whole weight gain loss thing that ive been struggling with....I probably will eventually have to find a good pain clinic in Charlotte. FMS, CFS, osteoarthritis, possibly degenerative bone disease, and i've heard the allodynia thing ...idk what to think anymore......im just sick of pain

it's so hard to have a job  and work 30 hours a week....i actually had to quit my old job as a cook because it was way too difficult and the oxycodone was not helping enough. There were times where I would litterally have to sit down and would start crying. Picture that a 21 year old kid with a lot of older guys seeing this and my bosses, it was actually really emberrassing. Every night after getting done from the restaurant I litterally could barely walk and felt like I needed to be carried out by a stretcher. Finally I just recently got a new job at a golf course and it's still very difficult but honestly I have had probably atleast 10 different jobs and I can without a doubt say that my new job is the most caring and understanding facility I have ever worked at. They check on me every day to make sure I'm ok, they gave me the hours that would be best for me and they even made it to where I don't have to do one of the major task because it's evident that it's hard on your back....So I am very blessed with this new job. It is a lot easier than my other one before, but still everyday is a struggle...I'm too young to even think about dissability and I plan on working until I physically can not do it anymore...I don't have a social life, I have moved up here from Fl. and have no friends, had a girlfriend for a short time but that didn't last long due to everything that is wrong with me which made my depression obviously worse, family life is tough because they don't seem to fully understand what I live with and go through each day, and with all of the stuff on the news about druggies and what not it obviously brings that to there attention. I get drug tested, I dont drink, I dont smoke marijuana ( I used to and it did help) but I havent in 8 months. Everythings just so tough with all my family because I am so young and obviously I am a rare case as I am reminded by my doctors constantly....Thanks for the info though I am going to do a little research on everything you said and share my thoughts with my rheumatologist. If you don't mind me asking what is the clinic and what did you mean by you get what you pay for?

Thanks bayoub2

Hi and welcome,

First of all, it is not true that the more pain meds you take the more pain you will feel.

I think your rheumatologist is doing what is best for you right now. Not all people with fibromyalgia feel the same amount of or type of pain.

Your pain is chronic and perhaps intractable. that means that it is far more difficult to treat than most pain.

Moreover, I would suggest that you do research on intractable chronic pain and chronic pain. What is true is that as long as your pain is not properly treated, the more nerve damage you will suffer. That is why some opiates seem to not work, they are not the proper ones to use.

I have and am being treated for intractable chronic pain.

What you are taking is the first line of pain meds. If they are adequate you should continue using them. If need be, your dr. will put you on the second level of medications.

Fibromyalga pain can lead to intractable chronic pain which in itself is considered a disease that requires treatment. If not more than just nerve damage will occur. Higher blood pressure and blood glucose levels can result. This can even cause weight gain.

If your pain is severe, and exercise hurts, don't do it. Your pain is different.

I hope for the best for you and, I am happy you have a great doctor.

Donnaeil

Oh, the metabolic issue is a problem with intractable pain.

There have been several reputablestudies done on pain meds. It has been shown that after a long time on opiates, the brain start treating it as pain, not pain relief. No lie

Maggie

Maggie, can you please point me to those studies? If they exist, I am sure they are more than 10 years old.

Intractable pain management is know only by a small population of doctors because it is rare.

What does occur, is if the pain medication given is wrong, then it will stop working.

The correct pain medication will eventually allow the patient to reduce the meds as they get better and the nerves start to heal.

I have read thousands of scientific pain studies in my work. Up to date information is different.

I prefer to help Ouchie to the best of my knowledge instead of debating this issue.

Donnaeil