Diagnosed with FM. Nothing helping. Leg pain much different than back; neck; shoulders; arms. can't even hold a book to read for much length of time anymore, muscles weak and feel burned out. But leg pain is ever present and bone deep. should i ask f

Question

Diagnosed with FM.  Nothing helping.  Leg pain much different than back; neck; shoulders; arms.  can't even hold a book to read for much length of time anymore, muscles weak and feel burned out.  But leg pain is ever present and bone deep.  

Ive' tried Lyrica; elvail; cymbalta; percoset; flexeril; all to no avail - off all of them now (this has been over a 2 year period); now on tramadol, which is also not helping.

I am fine so long as I lie around and do nothing all day.  Then the pain is manageable.  However, just this little bit of typing here is burning out my arms.  The pain is really getting me down, and I feel pressure from work to return, when i just feel like burying myself.

should i ask for a bone scan?

rdemain · Answer

Laying around isn't good, I have found that exercise does help when applicable.  I say that with a deep grain of salt.  Because with having fibro you can only do so much before it throws u into a flare.  So being active is very beneficial.  I have always been the one that over does it and having to learn to live with this CRAP has been a learning experience.  Even when I flare up and I don't feel like going anywhere or doing anything and even driving to the store is unbearable  I make myself and if I do that a little bit everyday I will begin to feel a little bit better everyday.  It is a learning experience everyday.

kshirk · Answer

I was diagnosed with fm in 2007. So far I have tried lyrica and neurontin which didn't help at all. I hurt all over at ttimes and other times just in my back. I also have arthritis in both shoulders and lower back. I'm only 47 and feel some days like 87. Can't stand to lie in the bed to long as it makes it worse. Just started watching my 5year old granddaughter and it is very exhausting for me and painful. Would like any suggestions as I'm at my wits end. Depend on pain meds just to get through the day most days. Need help as my husband is the only one working

inspiredmomof5 · Answer

I have had Fibro for many, many years. (15+). My situation is so strange in the respects of my body goes into remission and I live virtually symptom free for months (some times) even a year or two. I certainly wish I knew, what sent me into remission, or brought my symptoms back into full swing, with a vengeance, but I haven't a clue. I am back into full time over all body pain, shaky beyond belief in my limbs, anxiety ridden accompanied with full blown panic attacks. I went to a hormone specialists, 3 states away and he diagnosed me with full blown adrenal exhaustion. It seems as though with the FM comes back it is always accompanied with something else. I too agree with many posts above that state, lying around makes our symptoms worse, however, as you all know, that is all we can do at times. Does anyone else have adrenal exhaustion or hormonal imbalances, such as, low estrogen, low testosterone, thyroid problems, etc...? If so, what has seemed to help with your symptoms? He has put me on some natural products and I haven't noticed a difference, as of yet. It has only been a month. I would love to hear some feedback from anyone that has some. I am so tired and visibly shaky!!! all over!!! Panic stricken and riddled with pain, mainly in my muscles. Thanks in advance...Kelly

chippi1 · Answer

Hello, I've been a Fibro sufferer for over 13 yrs. now and finally found something that has helped. Please read my latest post on the forum about Ribose.  Blessings

TrudieC · Answer

You have received a lot of good advice here.  I know that when I eliminate sugar and wheat that I feel so much better.  I would also encourage you to look into treatment for depression.  Chronic pain often comes with depression.  Once I had my depression treated I was better able to accept the change in my body and to better search out solutions.  Do ensure you are taking magnesium for your muscle pain (ensure you are eating lots of potassium as well) and try D-Ribose powder which helpls with the energy and pain.

acker · Answer

absolutely agree that lying down a lot is no good either. it's a very fine line between doing too much and doing too litttle. 
i find that doing errands/ chores/ padding around home with tasks needed to simply live each day is more than enough movement and exercise than i can handle. 
i have felt the effects of longterm immobility, was lying down 22 hours a day - gradually recuperated to around a total of 17 hours sleep/ seated/ lying - and i can feel my muscles are out of shape. 
but overexercising in the circumstance of being so ill is just as damaging. 
severe pain is a definite message from your muscles to 'stop'. they can't make it any clearer

barbinsky · Answer

Thanks for all the suggestions.  I was bed ridden since Saturday, with my entire body screaming from the inside out, my legs felt like sausages that would split right open.  I did try to walk and such, but the pain was just overwhelming, to the point where I was shaking in hands and legs.  So, yesterday I was able to get up, went to doc's; he's taking me off tramadol as it doesn't seem to be helping, and going back on the Elavil but this time he's bringing me up to 150mg/day.  So, percoset for break through pain.  I've been up most of today, used the heating pad most of yesterday and it helped.  I'm a bit scared going that high on the amitriptylene, but will give it a try.  Also running more blood again tomorrow to check for RF or lupus type indicators.  On and on and on it goes.

idesofmarch · Answer

I agree, lying down feels better but it's doing you harm by wasting away your muscles. Then when you get up to do anything your muscles react in the worse way. You really need to find a heated pool, like 93 degrees, and an exercise group for like arthritic people. Nice and slow stretching exercises in water up to wherever you feel comfortable. You can sit on a seat in the pool, walk til it's waist deep or even neck deep. Hold onto the bars or be free in the water. Look at you local physical therapy places or the YMCA. But make sure they have the water at 90 degrees atleast. Also make sure that the exercise is for arthritic, knee replacements, hip replacements, Fibromyalgia type people or just slow moving people.  If a doctor will write a prescription for this treatment, then there is a good chance that your insurance will pay for it. If not it shouldn't be more than $5.00 per session. Give it a try, go very slow at the beginning, You don't have to keep up with the fastest person there either. Go at a comfortable pace, your own pace every time you go. It should be once to twice a week. Try to get a time of day that is usually the time you feel at your best. Like mid morning to early afternoon is best for me, and most people with FMS. It will help flexibility, pain, stiffness, depression and more. If you go back to work, make sure that your doctor gives you a note that releases you from work during your exercise time plus changing and driving time so you don't feel rushed. It may also be a good time to reduce your hours and or be on light duty if it is offered at your work place. Please I beg of you, do not stay in bed or a comfortable chair for most of the day. It will hurt you in the long run. I know that quitting my job was my only option but laying around the house wasn't good for me. It really did me in.  Find a comfortable way of being active, rest every 15 minutes, then go back to an activity, rest 15 to 30 mins. then do a fun activity, rest, then do a small chore or part of one then rest again.  Do this everyday. Unless you are having a major flair up, then you can spend a day in bed or on the couch. But remember to get up and get moving. Find a place to walk in a comfortable temperature, ask a friend to join you, do this a couple of time a week but work up to 30 mins. 5 days a week. Make sure it is level ground, inside would be best, and go as slow as you need to. I hope that something that was suggested gets you moving and your pain level gets better. Sincerely Hurtin'

wordonthestreet2006 · Answer

I agree with Totie. I suffer hugely if I sit/lie around. In fact on a Sunday (When I treat myself to a lie in) my pain always seems worse and I'm often physically sick with pain. The burning in your muscles is awful, I can empathise fully with you there, but I do find that getting out of a chair and doing something, however painful and exhausting (believe me I know) benefits in the long run, I know it sounds daft but I bought myself a WII Fit games console and often try and have a go. Just to give me some exercise. Going for a walk is easier said than done as I often find that I struggle to get home again and are then so exhausted I can't do anything else, but with the WII fit I can control the amount I do and if I need to flop into a chair, I can.

Totie · Answer

Okay, this is just my opinion, but lying down doing nothing is only making things worse for your muscles. I know the deep bone/muscle pain you are referring to and it is bothersome, but if keep still it will just weaken your muscles. You can try very slowly doing stretches into you can work into other things. I know it is going to hurt, but being immoble will do nothing for you....

acker · Answer

i totally get what you're saying about in last paragraph, 100%!
i'm scared to get a bone scan cause i've been lying down most of the last 2-1/2 years - probably lots bone loss (low density) - i have taken a bit of calcium supplement.
if you can possibly stay rested, and not return to work, just do, because going back to work will do: what? absolutely nothing good.
no work or income is a shi+ situation cause well i bet you hate lying down - but it's all we can do for or until any slight improvement.
magnesium i find helped with the buning (just a bit).
dr tested me for leaky gut - showed positive - a gut bacteria (too much of a bad one) causes lactic acid build up in the muscles, adding to the burning.
the burning really stops me from most things. fortunately i've improved over the years; i was not able to hold a book either. that is absolute hell.
dr took me off wheat and dairy - this helped a lot. don't know if this is something you have done yet, or can do, but i recommend it, without wanting to be too preachy. it really reduced the inflamed-all-over generalised pain.
not sure what bone sacn you were after, but if you think it'll tell something - yes
take care