HELP!!!!

I am new to this forum but I need some advice/help.  My husband was diagnosed with firbromyalgia several years ago after all the normal tests came back negative and it was decided that this was what he has.  He is unsure if firbromyalgia is what he really has because he feels that it's just something else.  He is in pain ALL THE TIME.  Some of the time he hurts less but he hurts all the time.  The reason this is so important is because of the affect it has on other family members.  His dad was not diagnosed with fibromyalgia but the last 10 years of his life he spent in bed mostly because of his pain.  My husband's sister has started experiencing some of the same symptoms as my husband began with.  My FIL, husband and SIL all have similar physical charcteristics.  I'm hoping to find some help for my husband and SIL along with my children (and grandchildren) who may also have these same problems as they age - especially our youngest child who looks so much like her father it's scary (she has already had costochondritis several times) so I'm afraid that she will be the one who will end up like her dad.  She was recently diagnosed with L.E.O.P.A.R.D.S. syndrom and I'm not sure what the connection between the two could be.  Any ideas or suggestions?  My husband has taken Lyrica before but doesn't at this time.  He thought that it didn't really help that much.  Right now he takes SAM-e and ibuprophen.

Hi, KMC!  I'm so glad you found us and joined in.  Yes, your husband should come on and ask questions so we can help him.  We do have a few men on the forum.  Not a lot because fibro seems to affect females more than males. 

 

I've have fibro for decades and am never pain-free but I have learned to control my pain and have had a great life in spite of this illness.  I, too, use ibuprofen with food along with extra strength Tyleno, malic acid/magnesium supplements and vitamin D3 supplements.  Many with fibro are deficient in these vitamins and nutrients. 

 

Some members do have family members with fibro.  My closest family member with fibro is my first cousin. 

 

Be sure to check out Fibro 101...the first thread on the forum.  There are links to good information about fibromyalgia and you will learn a lot.  Be sure to check the links about malic acid/magnesium supplements and vitamin D3 supplements.  These tell you how they work in the body. Have your husband talk to his doctor about this.  

 

Don't hesitate to ask questions because we are here to help you and your husband.  See if he will join in. 

 

Sherrine

Thanks all for the welcome.  to Acheybody LEOPARDS syndrom is:

LEOPARD syndrome is a rare genetic disorder characterized by abnormalities of the skin, the structure and function of the heart, the inner ear, the head and facial (craniofacial) area, and/or the genitals. In individuals with the disorder, the range and severity of symptoms and physical characteristics may vary from case to case.

LEOPARD is an acronym for the characteristic abnormalities associated with the disorder: L stands for (L)entigines (multiple black or dark brown spots on the skin); (E)lectrocardiographic conduction defects (abnormalities of the electrical activity and the coordination of proper contractions of the heart); (0)cular hypertelorism (widely-spaced eyes); (P)ulmonary stenosis (obstruction of the normal outflow of blood from the right ventricle of the heart); (A)bnormalities of the genitals; (R)etarded growth resulting in short stature; and (D)eafness or hearing loss due to malfunction of the inner ear (sensorineural deafness). Some individuals with LEOPARD syndrome may also exhibit mild mental retardation, speech difficulties, and/or, in some cases, additional physical abnormalities. LEOPARD syndrome is an autosomal dominant genetic disorder.

Our 16 year old daughter was diagnosed with this last year.  The doctor met with my husband also - who bears the same chacteristics and said that he also has it as well as his sister and possibly their father.  Rebekah (our 4th child)  is our 2nd child with a heart defect (her's is Pulmonary stenosis).  We also had a son (bonus baby) who died during open-heart surgery.  It amazes me that the older we grow the more we find out about ourselves and our families.  We didn't have any idea when we married 31 years ago that we would go through what we have.  It never crossed our minds that we would be passing these unknown things to our children.

 

We live in a group home for mentally challenged people and he is the house manager.  He is afraid that if he takes anything too strong it will be an end to his job.  He loves working with these special people BUT I  think that he is getting to the point where the pain is getting worse.  For instance, tonight we went to the grocery store.  I had to leave to go pick up our daughter and I left him and 'our 2 guys' to check out, load the car and then unload at home.  Halfway through putting away the groceries he said that he just had to stop and sit down.  He rested a little while and then felt better.

Sounds like you all have alot on your plate! Try, if you can, to watch your stress. Stress makes the fibro really worse. A positive outlook and being able to laugh despite it all goes a long way!
Good luck with just starting your journey into fibro! I hope your husband is able to find ways to accommodate his illness and still be able to handle such a demanding job. I used to be a Teacher for kids with special needs and it sure takes a special kind of heart to love those kids/ adults with the dignity they deserve!
Does your husband get any chance during the day to just focus on himself? He may need that. A half an hour to nap with some hot packs on can do wonders to rejuvenate someone.
I will pray for you all that his fibro is a mild one.
Best wishes,
Tracee