New to this forum but not to OH
Any help to be had????
Been w/OH for 5+ years. My History:
Diagnosed with Fibro in 1997.
Up until this time, I'd only suffered with bouts of "illness"...fatigue that started in 1989, for days/weeks at a time. Pain began in about 2002, in my hands, arms and legs.
RNY in 2/2005.
Had my RNY (open) and lost lbs, going from 312 lbs to 165. Since this time, the Fibro came and went, periods of time w/NO pain, but always bouts of fatigue that would hit HARD 3-5x year. Always, when it did hit, I would have to be IN BED until it passed. When it would pass, it was as if I was somehow "disconnected" from the experience afterwards...the only way I can properly explain it is to say how I felt: like I'd been thru a big, dark tornado, that once passing, left me weak and my head spinning...fearful for the next "episode".
Began weight gain in 2007/2008. Began looking into revision surgery, as my diabetes #'s were on the rise.
ERNY/HERNIA SURGERY 11/2008.
Open surgery (again). Hernia was repaired (incisional). More sm intestine bypassed...did not know how much... Began really losing! By Feb, lightheadedness, dizziness, extreme fatigue. Weighed 145 lbs.
3/2009: Blood work reveal LOW blood counts (as well as nutritional deficiencies). Saw Hematologist: Hemolytic anemia, but no reason why. June 2009: Gall bladder removed (lap).
By mid/late summer 2009, very ill...135 lbs...chronic diarrhea from ERNY.
Aug 2009: began to see doctors at Mayo clinic. October 2009: Diagnosis: Malabsorption. Needed to have ERNY reversed, lest further and more detrimental complications that were sure to occur.
RE: Fibromyalgia: Had not had any horrid FM pain since late summer of 2008--mostly minor pain, altho had episodes of fatigue/exhaustion. Over the years, have made appts with various rheumy's, each with his/her own explanation of my symptoms: "You have tennis elbow!" or "You don't have Fibromyalgia because you didn't SCREAM when I touched your tender points!!!" (Oh really...let me kick your crotch!) I'm disgruntled, so discontinued seeing doctors. No meds too. Just suffer w/it.
December 2009: Reversal of ERNY (another OPEN again).
January 2010: SEVERE depression sets in..nearly suicidal...from the surgery??? also SEVERE SEVERE muscle pain. HOWEVER this time it is accompanied by JOINT PAIN, which has never occurred before.
Now, it is June 2010... I have had NO relief for SIX MONTHS!!! Muscle pain. Joint pain. Vision problems: blurry vision and watery eyes. Irritable (is just a word.....) x 1000. Leg swelling (ankles). Tailbone pain. Muscles twitch during the day. RLS....ceiling fans and the sheets bother me!!! Terrible Tinnitus in my R ear, as well as a feeling of "stuffiness" in R ear...which is not resolved w/antihistamines. MIGRAINES. I have had a migraine now for 7 days straight. I finally relented and taken Excedrin for Migraines.....even tho it is an NSAID....a no-no for RNY.
I finally decided to see a Neurologist this week. I did NOT mention the Fibromyalgia...too many bad experiences with doctors saying "it's in my head". He said I "could" have...only 8 tender points...but I'm not hurting like I can... not sleeping tho. He ordered a slew of tests, blood and urine.
I am just so, so, so, SO dismayed... I cannot seem to find an accurate "diagnosis" or treatment plan. I had tried Lyrica......a JOKE. Those commercials on TV: a JOKE....let's all take Lyrica and we too can work in a flower shop all day or be dressmakers!!!!!!!!!!!!!!!!!!!!!!!!
Due to the hemolytic anemia (which is getting better: RBCs now in the L Normal range) and the surgery and malabsorption, I am unable to work...since Sept 2009. Now I am so severely fatigued and pained, i cannot function at all, it seems. I ride my bike occasionally, to get some exercise, despite a migraine, or some (minor) fatigue... but it does not seem to help.
My liver enzymes are UP...and I have developed a kidney cyst.
ANY suggestions.....Fibro? This last surgery? Both? Shall I just "suffer in silence"? Can all of this kill a person? How do you go on, if you are this bad??
Thanks a load.
Liz
Been w/OH for 5+ years. My History:
Diagnosed with Fibro in 1997.
Up until this time, I'd only suffered with bouts of "illness"...fatigue that started in 1989, for days/weeks at a time. Pain began in about 2002, in my hands, arms and legs.
RNY in 2/2005.
Had my RNY (open) and lost lbs, going from 312 lbs to 165. Since this time, the Fibro came and went, periods of time w/NO pain, but always bouts of fatigue that would hit HARD 3-5x year. Always, when it did hit, I would have to be IN BED until it passed. When it would pass, it was as if I was somehow "disconnected" from the experience afterwards...the only way I can properly explain it is to say how I felt: like I'd been thru a big, dark tornado, that once passing, left me weak and my head spinning...fearful for the next "episode".
Began weight gain in 2007/2008. Began looking into revision surgery, as my diabetes #'s were on the rise.
ERNY/HERNIA SURGERY 11/2008.
Open surgery (again). Hernia was repaired (incisional). More sm intestine bypassed...did not know how much... Began really losing! By Feb, lightheadedness, dizziness, extreme fatigue. Weighed 145 lbs.
3/2009: Blood work reveal LOW blood counts (as well as nutritional deficiencies). Saw Hematologist: Hemolytic anemia, but no reason why. June 2009: Gall bladder removed (lap).
By mid/late summer 2009, very ill...135 lbs...chronic diarrhea from ERNY.
Aug 2009: began to see doctors at Mayo clinic. October 2009: Diagnosis: Malabsorption. Needed to have ERNY reversed, lest further and more detrimental complications that were sure to occur.
RE: Fibromyalgia: Had not had any horrid FM pain since late summer of 2008--mostly minor pain, altho had episodes of fatigue/exhaustion. Over the years, have made appts with various rheumy's, each with his/her own explanation of my symptoms: "You have tennis elbow!" or "You don't have Fibromyalgia because you didn't SCREAM when I touched your tender points!!!" (Oh really...let me kick your crotch!) I'm disgruntled, so discontinued seeing doctors. No meds too. Just suffer w/it.
December 2009: Reversal of ERNY (another OPEN again).
January 2010: SEVERE depression sets in..nearly suicidal...from the surgery??? also SEVERE SEVERE muscle pain. HOWEVER this time it is accompanied by JOINT PAIN, which has never occurred before.
Now, it is June 2010... I have had NO relief for SIX MONTHS!!! Muscle pain. Joint pain. Vision problems: blurry vision and watery eyes. Irritable (is just a word.....) x 1000. Leg swelling (ankles). Tailbone pain. Muscles twitch during the day. RLS....ceiling fans and the sheets bother me!!! Terrible Tinnitus in my R ear, as well as a feeling of "stuffiness" in R ear...which is not resolved w/antihistamines. MIGRAINES. I have had a migraine now for 7 days straight. I finally relented and taken Excedrin for Migraines.....even tho it is an NSAID....a no-no for RNY.
I finally decided to see a Neurologist this week. I did NOT mention the Fibromyalgia...too many bad experiences with doctors saying "it's in my head". He said I "could" have...only 8 tender points...but I'm not hurting like I can... not sleeping tho. He ordered a slew of tests, blood and urine.
I am just so, so, so, SO dismayed... I cannot seem to find an accurate "diagnosis" or treatment plan. I had tried Lyrica......a JOKE. Those commercials on TV: a JOKE....let's all take Lyrica and we too can work in a flower shop all day or be dressmakers!!!!!!!!!!!!!!!!!!!!!!!!
Due to the hemolytic anemia (which is getting better: RBCs now in the L Normal range) and the surgery and malabsorption, I am unable to work...since Sept 2009. Now I am so severely fatigued and pained, i cannot function at all, it seems. I ride my bike occasionally, to get some exercise, despite a migraine, or some (minor) fatigue... but it does not seem to help.
My liver enzymes are UP...and I have developed a kidney cyst.
ANY suggestions.....Fibro? This last surgery? Both? Shall I just "suffer in silence"? Can all of this kill a person? How do you go on, if you are this bad??
Thanks a load.
Liz
There are days I wi**** would kill me! But please don't suffer in silence, keep searching for help. Maybe try a pain clinic since they seem to have taken over treatment from the rhumys. Chronic fatigue quite often goes along with the fibro so actually sounds like you have both. the biggest difficulty getting an exact diagnosis is that there are no set in concrete symptoms where the doc can say oh that's what it is!The symptoms run the gamut. I would suggest getting on the internet and going to some of the fibro sights, if you go back on this forum you can find several sights others have found. Your best defense is information. For myself the only pain relief comes from narcotics and cymbalta. Yea lyrica seems to be a big joke for most of us. See if you can find a support group near you, there are more of them all the time and feel free to come pick our brains any time! We are all here to help!
Wow Liz, you have certainly been through hell and back.. okay, not back yet, but don't give up. I agree that you should NOT suffer in silence. Knowing that there are others out there who are going through (to some degree) some of the same things you are helps. Maybe not the pain or fatigue but it helps emotionally to know there are others here who understand and have felt similar. I also agree that you need to seek knowledge regarding your symptoms. It sounds like fibro to me too. Knowledge is power.
My biggest pain right now is in my sciatic. I have a medial spinal block this week to see if that will help. I'm not had as much pain in my sciatic nerve, but I have still had some. The pain management doctor I go to said that with the sciatic it sometimes takes 2 or 3 of these blocks (they can only do up to 4 a year) for any prolonged relief. It's not a painful procedure but your activity is limited for about a week.
I currently take narcotics for the pain. I've been on Cymbalta for about 6 years for depression. Since Cymbalta is time released (and with the RNY we can't do time released) I take 30 mg. in the morning and then again at night. I also take an older anti-anxiety med with my Cymbalta. It helps boost the effects for me and makes a difference in how I feel. I don't know the spelling but it's something like busproin. Right now I'm semi laying on my right side in my recliner to help keep pressure off the sciatic nerve which was hurting about an hour ago.
This is all a trial and error process for each of us. I hope you find relief soon. Please come here and "talk" whenever you need to.
Margie
My biggest pain right now is in my sciatic. I have a medial spinal block this week to see if that will help. I'm not had as much pain in my sciatic nerve, but I have still had some. The pain management doctor I go to said that with the sciatic it sometimes takes 2 or 3 of these blocks (they can only do up to 4 a year) for any prolonged relief. It's not a painful procedure but your activity is limited for about a week.
I currently take narcotics for the pain. I've been on Cymbalta for about 6 years for depression. Since Cymbalta is time released (and with the RNY we can't do time released) I take 30 mg. in the morning and then again at night. I also take an older anti-anxiety med with my Cymbalta. It helps boost the effects for me and makes a difference in how I feel. I don't know the spelling but it's something like busproin. Right now I'm semi laying on my right side in my recliner to help keep pressure off the sciatic nerve which was hurting about an hour ago.
This is all a trial and error process for each of us. I hope you find relief soon. Please come here and "talk" whenever you need to.
Margie
Thanks so much for the comments. (BOTH OF YOU).
I had tried Cymbalta last year, but it made me so nauseated all year long, that I could not continue. I currently take Liquid Prozac...had no idea there was such a thing.
I'm currently on Day #8 of a migraine...and yesterday I decided I HAD to take a NSAID...Excedrin for migraines..... I thought my head might explode...but no such luck. ha ha. The headache has subsided a bit, however the nausea has kicked in.
I mentioned that I saw a Neurologist this week. I'm going on Mon for the blood tests. Of course it will all be NEGATIVE... because that's how it goes, eh? Sarcasm.....
I'm sorry to hear of your sciatic pain...I've had that too...I have scoliosis, and in that lower portion of my back is one vertebrae that is only partially formed, so it slips...above it and below it are 2 (ea place) that are fused together (from birth)... hence, the slipping one can become a nuisance, esp if I horseback ride...so I don't. It's hard to try to 'relax' when you need to, and that adds to the anxiety, causing more muscle tightness...you know? Well more later.
Liz
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