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Undiagnosed Symptoms Community

This patient support community is for discussions relating to undiagnosed symptoms, breathing difficulties, feeling cold, cough, diarrhea, dizziness, fainting, fever, indigestion, itching, nausea, numbness, pain (chronic), paralysis, rash, sweating, swelling, urination problems, and vomiting.
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MedHelp Member's Question

Fibromyalgia and Lymphdema

by deadend, May 11, 2006 12:00AM
I'm 31 and after 6 long years of chronic problems unexplained I have finally been diagnoised with Fibromyalgia and Lymphdema. Sorry about spelling.  Anyway I was wondering if anyone out there has had either one and if so what kind of treatment may have work for you.  They say both conditions are chronic and there is no known cure for either.
Member Comments (10)

by crazyladi99, May 11, 2006 12:00AM
I have FMS and CFS I have had them both since i was 19 and I am 29 now.  The battle has been long and I dont believe that I have FMS at all.  Anyhow The best thing for me was not to dwell on the pain eventhough it was an every single day/minuite thing.  I stopped smoking, eat all organic and natural things.  At least try to.  The best thing is not to think about it..  Trust me when i say this that i know that it is hard because all you feel is pain and fatigue you just wish that it would end. One doctor after another I have gone to and they all say something different.  Right now I am in the process to see if I have Endometriosis which i was told that i had when i was 15.  I keep going to doctor after doctor and still no relief. To me I think that there is something more to this FMS,  I think that they just give you a name because they have no idea what the problem is.  The problem with that is that I dont have closure with FMS because people still are not that educated about it and how it makes someone feel and what it does to your body.  You feel like you are dying inside and no one can help you.  I wish that I could help to be I am still where you are and still lost.  Maybe its environmental like they all say.  I have no idea.  I am sure stress doesnt help with it at all.

by crazyladi99, May 11, 2006 12:00AM
agreed

by patsy10, May 13, 2006 12:00AM
I have a whole bunch of really bad symtpoms too and feel like I'm dying as well.  I have horrible pain in neck, shoulder blades, butt cheeks thighs, along with numbness, tingling, twitching muscles.  I've seen 3 neuro's because I thought I had MS.  All the MRI's came back normal as well as evoked potentials, EMG etc...I received the fibromyalgia diagnosis as well.  I think the fibro thing is bunch of bull.  I don't believe it for a minute.  It's not a disease, it's a syndrome they diagnose people with when they don't know what's wrong or they don't feel like looking any further.  Something is wrong, people don't suddenly come down with whole body symptoms for no reason.  I'm going to keep on searching.

by ticked, May 14, 2006 12:00AM
To: patsy10
I totally understand where you are coming from.  Its a never ending journey and something is the cause.  Maybe some goverment cover up lol.  Seriously you never know.  Its not fair for us to suffer this way at all.  13 yrs way to long and I am afraid its just going to get worse.  I have more problems since i had my child it has totally taken me for a loop.  I dont know what to do

by bbird, May 15, 2006 12:00AM
After nunerous doctors, specialists and tests, I too was diagnosed with Fibro several years ago.   After being diagnosed, I bounced from doctor to doctor trying to find someone to help me.   I was on the verge of suicide when I finally found someone who actually listened to me.   I am being treated with a variety of meds that help me to live with the constant pain - it's not a cure-all but it reduces the pain from a 10 to about of 6 or 7.   The fatigue is, at times, overwhelming and is probably what is going to do me in.  Unless you have had this type of fatigue you cannot understand how hard it is to just put one foot in front of the other.  It's a very depressing life (if you can call it a life).   I too think that there is an underlying cause and am really tired of people telling me that this is a 1) made up disease 2) all in my head and to 3) just get over it.   Unless you live with this every day, you can never know how bad it really is.

by charley1986, May 20, 2006 12:00AM
I have to agree with all of you - I have been saying for years that this is just some name they give the SYMPTOMS - and yes, it is a miserable life.....but the only reason that I keep going is for my son.  Being divorced and bringing up my son alone is hard enough - but what really sucks it that I cannot be the kind of Mom I really WANT to be - I just don't have the energy....I wouldn't wish this on my worst enemy.  But I'm like the rest of you, they can classify me as a hypochondriac all they want - but only I KNOW HOW I FEEL....IT IS NOT IN MY HEAD OR YOURS OR YOURS OR YOURS..........

by floxie, May 22, 2006 12:00AM
have you ever taken a floroquinolone? (cipro, levaquin, avelox, tequin etc.)  Those are classic symtoms of an adverse reaction.

by tigers2den, Mar 25, 2008 08:13PM
To: all
Most in my immediate family have same symptoms,  but differ, unlike depressed area.  The swelling, and often ruptures under the skin, which are tender, massive rashes, and sore eruptions, on the shin of both legs.  They almost healed, but after being seen by a skin specialist, but came back worse. Undiagnosed, sister suggested this site.  MY MOTHER DIED AND WHEN WE QUESTIONED THE BURIAL AND FEATURES OF DONATIONG THE BODY, HER CHOICE,I WAS INFORMED THAT THE CAUSE OF THE SOURCE WAS NOT KNOWN.  AFTER CONSIDERATION OF THE WHOLE FAMILY,  WE ADVISED THE ANATOMY BOARD,  NOT TO TRY AND OPERATE ON HER, THIS WAS TO SAFEGUARD THE NEW DOCTORS WHO WOULD BE PUTTING THEMSELVES AT RISK.  THEY CONCURRED,  AND MY MOTHER WAS IMMEDIATELY PLACE TO BE CREMATED.  I RECEIVED HER REMAINS IN A SEALED UNIT WHICH WAS BURIED IN A SEPERATE AREA OF MY SITE.
SUGGGESTIONS:  WASH OFTEN WITH MIlD SOAP (IVORY) AND BLOT DRY,  DO NOT RUB.  SEE DR.,  TAKE MEDS, FAITHFULLY,  KEEP ABREAST ON IMPROVEMENTS OFFERED FOR CARE.  NO CURE AS YET.  BUT DO NOT GIVE UP HOPE.
MEDICARE DOES NOT PAY FOR ELASTIC STOCKINGS, MAYBE WE COULD BE THE CHANNEL TO TAKE THIS INFORMATION TO THE MEDICARE PEOPLE AND HAVE THEM INVESTIGATE THE POSSIBILITY OF COVERAGE.  GOOD LUCK.  
I AM A FEMALE, 76, 3YEARS GOING ON 4 WITH THIS PROBLEM. HEART, DIABETES, AND SPINAL INJURY.  PAIN IS LIVABLE BUT CONSTANT.  HAVE ALERGY TO CODINE AND SOME OTHER MINOR DRUGS(STATENS). ALMOST HOUSEBOUND. EXCELLENT MEDICAL COVERAGE AND DRUG PLAN.  LIVING IN THE BALTMORE COUNTY AREA, MARYLAND 21221. FEEL FREE TO CONTACT ME.

by tata33, Mar 27, 2008 12:52PM
To: all
I have been having some of the same problems for 2 and 1/2 years now it all started 2 months after giving birth to my last baby.  I get knots under the skin in the chest area and in the stomach they come and go and sometimes are there for a long several months and then get better and then show back up.  I have had tests from head to toe and ct scans from head to toe and mri from head to toe and blood work and heart tests and ekgs so many I lost count on those and the doctors still don't know what is wrong.  I have stomach problems stuff I use to be able to eat I can't anymore like salad and chocolate and milk and worse now that I don't have my gallbladder anymore and if I get gas and bloated the knots in my chest hurt worse.  I am at a lose.  I am only 33 and have 3 beautiful girls that I wish I could do more with than I do but sometimes I just don't feel like doing anything.  I am so depressed but if I take meds for that I get more gas and end up at the ER thinking it is a heart attack and given meds for gasteritis and sent home and it sucks and they look at you like your an idiot and they think you are just making stuff up and it sucks cause I am not I am young and I feel like I am 80 most of the time.  My 14 year old has been more like a mom to my 2 younger ones than I have and that is so hard but yet they understand and just say mom don't feel good, then that makes me feel worse cause I should be the one taking care of them not the other way around.  All the doctors I have been to don't care about the knots under the skin and then they just try to say they are fatty spots and then when I ask if they can hurt they say no they don't and I try and try to tell them that mine hurt and they don't beleive me and they tried to do a ultra sound on them but couldn't see anything.  I went from like June, July and August of last year with not hurting as bad and then it has all started up again back in September and it seems like this month it has gotten worse.  I just don't know.

by dottypotty, Mar 29, 2008 03:59PM
To: To all
Hi this is terrble fms and the drainees headakes ibs .Also i have a trapped neave in my leg and the numbnees i started with this about 8yrs ago first i was dignused with ostio arthritis my joints hurt as well mt hands and my fingers