Fibro

• Do you have fibromyalgia and if so - KittyC
  • My husband has this and has terrible - :)
    • Hubby definitely into supplements and the like - KittyC
  • Fibro - pony
    • In between fine but those flares.... - KittyC
  • i find that - just me
    • Hmmm, less sugar helps your pain? sm - mlstoo
      • try going sugar free if you can - sm - just me
        • Fibromyalgia versus the above MS - KittyC
          • RE sugar in diet - Sharon - MS sufferer
            • Sorry about your diagnosis, have you - KittyC
              • I haven't found a solution - Sharon

The messages you are viewing are archived/old.
To view latest messages and participate in discussions, select the boards given in left menu

Hey, I have extremely bad fibro too, have for the last 10 or more years.  Well, at least they say it's fibro, but it doesn't come and go.  The pain is always extremely bad and never ever goes away.  I have days when I can barely walk or get up out of bed along with very limited activities.  I can no longer do at least 50% of the things I used to do even simple house cleaning. 

I went through an enormous amount of testing and saw multiple doctors who gave me worthless medications that did nothing or just made me more sick and brushed me off.  Like in your post you said they are giving you a Medrol Dosepak?  Why on earth would they give you that?  Fibro is not an inflammatory condition and steroids will not do anything unless you have other comorbid conditions such as arthritis, lupus, etc.  Steroids cause all sorts of damage to your body, and if they are not helping you or you don't have other conditions, I absolutely would not take them.  Another thing they like to do is put you on NSAIDs.  Again, these do absolutely nothing for the fibro and can do irreversible damage to your GI system, kidneys, etc. 

The only way I can live and function to do absolutely anything is because I am on daily narcotic pain medications.  It took me a long time and several physicians to finally be referred to a pain management clinic that would actually help me.  It is inconvenient due to the ridiculous laws in this state regarding chronic pain patients, as I have to go once every month, but again, that's the only way I can function.  So, I would definitely suggest you see a pain management specialist or a pain clinic.  Regardless of what some of these ignorant doctors say, you don't have to "live with the pain," or take numerous expensive medications that just do more damage than good.  It may take a while depending on where you live to find a knowledgable pain management doctor with compassion and you may have to go to several different ones until you find the right fit, but eventually hopefully you can find one.  It can be very discouraging at times when you are in agony and doctor after doctor won't help you, but just don't take no for an answer.  You deserve not to live a life full of pain.

Good luck to you.  I really hope you find something that can provide you with some relief. 

Believe me, I feel your pain, literally. I have been misunderstood more times than I care to mention, even by family. Sometimes people think they know better than I how I feel. I have lived with this for several years, and I know what I am feeling and talking about. Actually I have always felt we have a great responsibility regarding our body and state of health; that is, to report what is going on, and most importantly to give the best history possible to our physicians. Sadly, this is still a diagnosis that is misunderstood and even questioned by some health professionals. My friend's husband looks at me every now and then and makes me go through the whole thing again after he asks me with doubt in his eye

NOW, WHAT DID YOU SAY WAS WRONG WITH YOU AGAIN? 

I truly do know your frustration. 

I was diagnosed in January of this year by a rheumatologist after having problems starting last August that began with a rash and my GP did a battery of tests - the rheumatologist started me on 1500 mg of Relafen (which has greatly diminished the tender areas like my hip areas), I also take 150 mg of Zoloft, 600 mg of neurontin, 50 mg of Tramadol every 4 hours as needed (which do me has not really helped the pain 100%, but it does lessen it a good bit) and I take a muscle relaxer at bedtime and sometimes during the time.  These meds do not zap me and I feel more functional with them than before. I also take Halcion if I am unable to fall asleep, however, these days it seems that I am so exhausted that I have no problem sleeping as long as I am not hurting and the muscle relaxer at bedtime seems to help with that. Of course now that my inflammatory markers are at a near normal range I am walking 30 minutes a day and have begun stretching exercises 15 minutes in the morning, 15 minutes at night to help with the muscles.  The rheumatologist has said that all of these will change as the fibro progresses and I age (I'm only 33) but he said if we stay on top of it it should be very tolerable for me from now on - I am thankful to my GP for the referral to this doctor because I have read of so many stories where the GP ignored the patient's complaints only putting them on powerful pain meds and not really getting to the source of the problem or telling them that there is nothing wrong or nothing they can do...I feel now that the pain is being managed, my biggest complaint is being tired at doing the simplest of things - like folding clothes - I feel that I need to rest after I do that - whereas before it was just a normal thing.  My rheumatologist has stressed that sleep/rest is very important so he says when your body tells you to stop and rest - do it - whatever it is you have on your to do list can wait - otherwise you're gonna really feel bad and then nothing on your to do list will get done. I see my rheumatologist every 3 months right now and he says once I am doing okay on the meds and everything seems in check we'll go to every 6 months and then yearly until something goes out of whack and my treatment needs changing - he seems to really be on top of things.

What meds are you taking?  Do you see a doctor on a regular basis?

As far as I know no carpal tunnel syndrome but my ribs are about to kill me today and I have noticed my arms, hands, fingers and the like giving me the blues. I have no pain at night, only when I lay my wrists down on my desk to type , they really hurt so bad and the elbows hurt and the arms, guess I am wearing out. If anyone else has similar problems, let me know. I took something for the fibro a little while ago and it seems to have stopped that really bad pain when I rest my wrists. Thanks

years ago. You mention the pain is in your ribs. When I was diagnosed that was not one of the key points, of which there are many. I have pain all over, really. I have very much pain in my neck, wrists, elbows, shoulders, lower back, etc. I have terrible burning and pain in my muscles in my arms and legs as well. I have advanced osteoarthritis and chronic fatigue, which can also accompany fibromyalgia, as I am sure you know.  Symptoms can certainly vary from one patient to another.  I wish you luck and success in your efforts to control pain. I wish I had the answer for everyone suffering daily with chronic pain.

and know what you are going through. I read somewhere that it is impossible do describe the pain, and that is how I feel. It is a gnawing, pulling, burning, aching, fatigue all the time. No one has helped, and what meds I have tried gave too many other bad side effects, stomach upset, etc.

what helped me was to eat less sugar and take lots of vitamin C and get a good B complex.  I eat LESS sugar, but I haven't cut out sugar altogether. I love chocolate too much. I just pace myself and that does seem to help.  Stress is a HUMOGOUS factor with people who have fibromyalgia.  Get the stress level down quickly.  There's good stress and bad stress. What I'm talking about is the bad stress.  Examples might be family conflict, extreme money problems, things you don't like doing but feel forced to do.  If you're in a job you hate, keep the job, but start looking for something else and make the change.  If you're in a rotten relationship, take steps to make it better or get out.  Got a kid who is constantly on your last nerve.  Take the upper hand and get that kid in shape and if they're old enough, tell them to get a job and get their own place.  These are just examples, but it's not an instant fix.  You'll have to help yourself in other ways in the meantime, like treating your body right by eating healthier and taking good supplements.  Give yourself a tentative calendar goal and try to reach that goal with your life changes.  Be realistic.  Don't tell yourself you're going to change your relationship in 2 weeks, cuz it ain't gonna happen.  Again, these are just some examples. Your life stressors may be completely different, but you get the picture.  Scheduling yourself is very important and make room for fibro flares, cuz they will happen.  Doctors are not generally sympathetic to the illness though some are coming around and rheumatologies are more helpful these days.  They put me on NSAIDS, which only made matters worse. They put me on anti-depressants and that was a bad move, too.  I go to a naturopath who on a daily basis deals with fibromyalgia patients.  Not all naturopaths are good with fibro patients, though and insurance does not pay for my naturopath though we do have a flexible spending account that I use.  Other supplements that I take are Omega (fish, NOT flax, there is a difference in how it works for fibro patients), Vitamin E, Barley formula made by Global DNA (it has stuff in it that regular barley does not), magnesium (extremely important for fibro patients), licorice paste (tastes awful by itself, put it in tea with honey).  One other thing, a lot of fibro patients have low DHEA. You can get this tested by a naturopath who will give you what I call a spit test. You spit in a few vials over a period of a few days, freezing each vial until all are ready to go and then they are sent to a lab and analyzed. If your DHEA level is low (mine was nearly nonexistent), then you can take a supplement called BioSom, which is a sublingual spray.  

I know it's a lot of stuff, BUT now that I'm to baseline and only have an occasional flare a couple, maybe a few times a year, it's WELL worth taking the daily supplements.

I can't tell how I feel for you and wish you all the best.

Fibro Fannie :)