5 1/2 yr post-op.. fibromyalgia, severely anemic, or both???

pinupgrrl74
on 6/7/12 6:15 am - Turlock, CA
 Hi there - please forgive the long post.  I need to vent, as much as ask for help and info.  I am a 5 1/2 year post op that was diagnosed with FM back in November.  In the last 4 years, I had a cervical spinal fusion in my neck (C5-C6), and have major back pain due to a fall down stairs in 2005 (before WLS).  I thought the weight loss would help with my back pain, which it did.  Then the disc in my neck herniated and had to be removed (2 years after WLS).   I then had three epidural back injections for the (T11-T12) area where I hit the stair.  Got all the fabulous side effects of having steroids injected directly into your spinal cord... hair loss, acne, and MAJOR WEIGHT GAIN.  LIke around 15-20 lbs PER INJECTION.  But - I didn't start having the all-over body pain (muscle spasms, aching, burning pain) that could be associated with fibromyalgia until sometime at the beginning of last year.  After seeing a rheumatologist, I was also found to be severely anemic (my ferritin level was a 7).  I've since been having IV iron infusions.  At one point I was having them weekly..now every 2 weeks.  I'm just not sure if my diagnosis is really fibromyalgia, or if this is all related to the anemia, which can cause muscle and bone pain too. Not to mention, between the surgeries, injuries, and Lyrica for FM, I've gained back almost all of my original loss.  So sad and so FRUSTRATED!! Anyone ever hear of a similar situation on the boards?  Any help would be sincerely appreciated!

Blessings,

D


Danyele   
286/ 269 /145


H.A.L.A B.
on 6/7/12 6:45 am
so sorry to hear that,
I know that low iron can cause similar symptoms to RLS. 
How about your B12? or B1? low levels of those (i.e.  B12 < 500 or 600) may cause in some people neurological issues...  How about any other vitamins... how about copper? (copper is essential to blood building and may cause non-iron anemia)

I had herniated disks and had 2 injections (in 2003 - way before RNY) and I understand the weight gain.  I blame the steroids on my weight gain and inability to lose on my own.  

Have you had a complete blood tests? you probably need all of them to determine what is really going on.

Including complete thyroid test (TSH, T4, freeT4, T3, Free T3, rT3 and so on).  You may also check the adrenal hormones..  The steroids mess them up for me for very long time. 

Iron infusion may help for one thing - but iron is really hard on the liver and may cause some temporary inflammation and pain. Last year - after my iron infusions it felt like my bones were hurting inside... specially at evenings.. that lasted for a few weeks (dull deep ache - not real pain).  I can't imagine  having that every 2 weeks... 

Hala. RNY 5/14/2008; Happy At Goal =HAG

"I can eat or do anything I want to - as long as I am willing to deal with the consequences"

"Failure is not falling down, It is not getting up once you fell... So pick yourself up, dust yourself off, and start all over again...."

pinupgrrl74
on 6/7/12 7:07 am - Turlock, CA
 Hi HB - thanks so much for your reply!  I've had more blood drawn that I can even believe!.. LOL  Amazingly, my B12 numbers were through the roof.. my last count was 17,514.. if you can believe that!  I had been taking my sublinguals daily instead of weekly.  My hematologist said I had enough B12 stored for at least a year!

I have an appointment with my bariatric surgeon on June 28.  I did the blood work that the office sent me, but I haven't seen it yet.  I'm WAY, WAY overdue to see him.  I moved twice since my 3 year post op (once to DC, and then back to CA, but 2 hours away from my surgeon).  But now I'm tired of messing with my local physicians and I'm going to my surgeon for answers (hopefully!).

I know that the iron infusions probably aren't a good long term solution.  Thankfully I've tolerated them pretty well so far.  They do give me IV Benadryl first though, so I take a long nap when I get home from the IV center.

Any further suggestions from other members would be most appreciated!

D

Danyele   
286/ 269 /145


H.A.L.A B.
on 6/7/12 8:23 am, edited 6/7/12 8:23 am

I know that some vitamins may cause nerve damage.
If you want to pm me your email I an send you some list of test that some smart people recommend and also some (word format) document that summarize the vitamins - minerals deficiencies and possible issue.
BTW: I just found out that my B6 is too high. So I need to scale that back a lot.  High B6 may cause nerve damage... I did not know that...
Hala

 

Hala. RNY 5/14/2008; Happy At Goal =HAG

"I can eat or do anything I want to - as long as I am willing to deal with the consequences"

"Failure is not falling down, It is not getting up once you fell... So pick yourself up, dust yourself off, and start all over again...."

bulldog24
on 6/7/12 11:07 am

I would suggest getting tested for Lyme disease I have had it 5 years. It can be misdiagnosed as FM or cause FM. It can also cause severe fatigue. You do not need to remember a tick,bite or rash.  Ask  for IgM and IgG western blot for Lyme disease I have all kinds of pain from it. Steroids can make Lyme go crazy.

If you need more info shoot me a message

    
(deactivated member)
on 6/7/12 11:12 pm, edited 6/7/12 11:13 pm
 Personally I  would REALLY  try eating a super -high- quality diet  and getting out i n the sun at LEAST 15 minutes a day .  I think that makes up for  a TON of missed or malabsorbed vitamins , etc.  

Moving and sweating also really help ( try swimming and a brief sauna or steam room session afterwards afterwards if U have back pain) .  

I really believe the common-sense approach to maintaing  wellness is  so much more sophisticated than all the massive vitamin - theories ( ditto , x 10  for DRUGS ) . 

Have you tried  eating  organic produce or beter yet ,  growing your own ?   FRESHNESS  makes ALL the difference in EFFECTIVENESS ! And its SO ridculously easy to grow Ur own ...
Judi J.
on 6/7/12 11:20 pm - MN
for anyone reading this the poster forgets that people who have had surgery and who therefore no longer absorb their vitamins CANNOT just use common sense and 15 minutes in the sun. 

sophisticated? how is that applicable to vitamins and deficiencies? geesh
Amy R.
on 6/8/12 1:05 am, edited 6/8/12 1:15 am
Hello from a Ferritin level 4 (2 weeks ago). My oxygen saturation is 3%.

I am having some of your issues. I just went through 2 weeks of iron infusions every other day. They are going to re-check my levels in 2 weeks. I have been diagnosed with pernicious anemia for over 2 1/2 years (I am about 3 1/2 years post op).

I take the sublingual B-12 and the slew of other vitamins recommended for RnY's, but I had kind of a "mutant" procedure and will never produce enough intrinsic factor to generate blood manufacture at the appropriate level. I am down 2 pints of blood as I write, and my last transfusions were in September (2 units). I have been scoped inside, outside and upside down and am not bleeding anywhere. I have had so much blood transfused over the last 3 years (due to the anemia and other health problems) that they do not want to do any more transfusions if humanly possible due to the risk. I was diagnosed with FM 13 years ago when it was rarely heard of and even more rarely diagnosed. My first spinal fusion was in 2007 - I will be fortunate to get through 2012 without another one. I have degenerative disc disease, which never stops - the degeneration just continues at whatever rate until you pass away.

I have been extremely fortunate with choices of doctors.

So I know your pain (literally). And I know your frustration. I am working on studying this whole mess with help from outside resources as my docs tackle everything with whatever they can do. Not many docs know about vitamin therapy, especially about how essential high (or what look to be high to them) B12 levels are to our health. My docs have been on a learning curve with me, and thank God they are mostly open to it.

So, no answers from me. Just want you to know you are not alone. It is extremely frustrating to not know what is causing particular sets of symptoms. You get your hopes up that if a certain malady is the cause, then you will certainly feel better when it is treated. Then it is treated and nothing changes for the better with your physical symptoms.

I hope you find your answers. This is such an individual journey for all of us. Take as much good care of yourself as possible.

Oh, and if you need Vitamin D, take a good dry D3 supplement. Go outside to play - but if you're post op, don't count on the sun anymore for the upkeep of your Vit D levels. Doesn't work that way for us post-ops. =)

Edited to add: The next step for me is something called Epogyn (sp?). It is a hormone that is given via injection. Of course now that I type this I can't remember which it does, but it is thought to help jump start either iron or blood production. Don't have time to look it up right now but you may want to google it or check with your doc. My understanding is that it is relatively new - but like I said, I cant check my resources at the moment and could be thinking of something else entirely. All I know is that it is the next step for me as determined by my nephrologist. Good luck to you.
loretta cowels
on 6/8/12 1:07 am - MI
RNY on 04/16/12
hi i to have fibro its an awful thing more then people relixe i took lyrica for about two years and gained 80 lbs lost it when i stoped taking it , There are other meds for fibro that does not cause so much weight gain. for me lyrica was scary and hard to come off of im on neorotin now witch can cause weight gain but not as bad as lyricia. I get the muscle spasms and the all over pain the spasms are awfull. ive been slowlly weaning off neortin and want to change to sevella it doesnt cause weight gain and it worked when i took it before but it was exspensive now im hoping my better insurence will help me with that problem. Hope this helps Loretta
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