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Male - New to site - Is there any hope?
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An_243713 posted:
Hello,

I am a male and just now in my early 40s. I was diagnosed 16 years ago. Since I was a male and only in my late 20s at the time, it took the doctors 5 years to figure I had Fibro.

Now, I have diabetes, low testosterone, am morbidly obese, and no real support structure.

I started testosterone replacement, but after a month my levels dropped even more.

Luckily, I have a desk job, so I have been able to continue to work, but I am the main income for my household, but not sure how long I will be able to keep my job. The fatigue and memory/thinking issues are getting very bad.

Does anyone have anything positive to provide?

I just don't see how things could get any better, and I have resigned myself that life will just be a slow and painful slide to not being able to take of myself.
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xperky responded:
I have similar worries as you. But, then I get distracted in a hobby or something joyful, and I feel more optomistic about my future.

I know it is hard to find any energy, but is there a hobby you've been wanting to start up, and just haven't gotten around to? I started crocheting and knitting this year, since I had to sit so much more than I was used to. My new hobby has perked me up most days.

Also, I find when I focus on the beauty in the little things around me, I feel happier than when looking at my challenging future.

Meditation helps a lot.

If you are feeling depressed, you may want to talk to your doctor about it. There is help. Many with FM, and other chronic illness, suffer from depression, so don't be embarassed to ask for help.

Welcome to the site!
With Compassion,
Margaret
 
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An_243713 replied to xperky's response:
Hello,

Thank you for the reply. I am very depressed. However, I have been run through almost all anti-depressants on the market as part of my Fibro treatment.

None of them work for the Fibro or the depression. Most did nothing, and a few had very serious side effects.

I have severe allergies to many medicines, and auto-immune diseases run in my family (father has MS).

The only hobby that I have left is reading, but I don't get to do that much. At least for enjoyment. Since I am still working and I work in IT, it takes almost all of my time, just getting to work and trying to stay up on the technology so that I don't loose my job.

I used to like to walk, but I have an allergy to the sun and walking even a short distance now hurts and tires me out.

Most of my family are just leaches and do nothing but take, and the rest, like my parents, are just trying to get by themselves and have their own problems.

I have minimal support, even though I am married. I mean how many time cane a spouse put up with you just sitting around because you don't have any energy.

Socrates knew that life was meaningless, but like him I am doomed to just live it. I get little pleasure from anything anymore and just don't see a better tomorrow.

Thanks for trying!
 
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CLKWC1964 replied to An_243713's response:
I have a hard time exercising but I make myself and I do believe for me it is a life saver. It lifts my spirits and also helps with pain, stiffness, and weight control. I recommend Leslie Sansone videos. They are walk videos. It is simple to follow and easy to do. Which is exactly what we need. Start with a beginner video. Maybe you can get your wife to do it with you which would be great for the relationship and a good healthy thing for both of you to do. I do my workout 5 days a week and give myself the weekends off. I sometimes do one mile and sometimes even up to five miles. It all depends on how I feel that day. Exercise release endorphins which help with depression no medication needed just a natural way to get the same affect. I will keep you in my prayers and truly hope that things will get better for you. This site is a great place to be also. Go to the toolbox and find ideas that will help you deal better with the fibromyalgia. There are other men here who also have it and Dr P is one of these men so do not feel alone. Welcome and hope you feel better real soon. Cat :0) God bless you , you are in my prayers:0)
 
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dollbug responded:
Hello and welcome....MiMi in NC....sorry that you are dealing with the wrath of the dragon....it is NO FUN...we, FMers, understand and know exactly how you feel...I am sure that you will soon find something that will help you cope better...

I would like to encourage you to be sure and talk to your doctor about getting your Vitamin D level checked...if you have not already done so...it is a simple blood test...BUT you MUST ASK the doctor to do it...as it is not (yet) included in the normal bloodwork that the doctors do...you said that you have a desk job...so perhaps you do NOT get enough of the natural Vitamin D...as so many other people...low Vitamin D can cause some of us to have additional pain and it can also affect other illnesses, according to the medical researchers...

OK...I wish I could tell you something that will help you with the fatigue....but I have NOT found anything yet...I continue to try to find something though...

Now...it is really important to MOVE...so be sure and try to make time to done some gentle exercising and stretching each and every day...(remember GENTLE)....

There are all kinds of "tools and tips" that you will find here....please check under the "tips" and "resources" that you will find to the right of this page...be sure and read the "sharing your toolbox" post....which will provide you with some tools that our own members have tried and found to help them cope better...

I have learned how to "control my FM pain" by taking vitamins and supplements and doing other things as well...it took me a long time though....there is nothing easy about learning how to cope with this very mean and ugly illness....it does take a trial and error process...which does take time and effort...you should allow at least 6-8 weeks of whatever you decide to try...before making a decision as to whether or not what you are doing is really helping you....

Learning how to pace, pace and pace some more is very important....limiting your stress as best you can....(this is a hard one for me)....getting enough sleep is also a must....and have a positive attitude is a must....

Now....you should also know that we are all different and what helps one may or may not help you....only you will know when you have found the right combination of things which help you....

Watching what you eat...and drinking plenty of water every day....take baby steps....a little bit at the time...you will soon be able to tell a difference...

OK...I am going to tell you what vitamins and supplements I take...which has helped me...
Magnesium malate, Omegas, Vitamin D, Super B complex and calcium plus others...as I do have other health issues...do your own research on these and be sure and ask your doctor about them as well...

Do not give up....we, FMers, must keeep on keeping on....you can have a good life...it just will be a different kind of life....and one you just have to accept and get use to...

I hope this helps you....post often, ask questions, make comments and/or suggestions....and know that we do understand what you are facing each and every day...

Take care and good luck...


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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xperky replied to An_243713's response:
Sorry about your depression. It stays with me too, and I can't tolerate the usual meds for it either. The best things for me have been meditation, moderate activities and distractions.

You mention an allergy to the sun. Have your doctors checked you for psoriatic arthritis or lupus? As I understand it, both cause sun sensitivities and pain, and are treatable auto-immune diseases. You may want to do some research on that and see if that sheds any "light" on the issues.

We welcome you here. There are so many of us who may understand some of the things you deal with daily. We like to offer our support. You may enjoy our company!
With Compassion,
Margaret
 
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booch007 responded:
Good morning Anon,

I couldn't pass this without responding to you.

This is the hardest thing I swear that I have ever battled in my life. Having support helps so much more to get through it. GLAD you found the Fmily. We are great to hold you up...keep posting and coming here! ONLY WE can really understand the trials you have each day.

I also as Mimi said, thought of your D, though mine was so low and I am repleted now, it didn't really help that much...but all avenues must be tuned and get in line. Such as your Vit B's and Mg. Look up under Dr.P for the thread on what he has a general perscription for his patients.

For the depression, I will tell you that movement and exercise is FREE. It has no side effects only discomfort in the beginning. I started with ONE SONG...one really hot "I LOVE IT SONG" It got me jumpin and moving. then I moved on to two. The Sansone Idea was great I have her too. But now I just use the radio and a hopping channel to move me....

Dancing is just walking in place. Richard Simmons though made fun of so much has great videos for the obese so that you start in a chair. In doing it *INCREASE SERATONIN FREE......maintaining bone mass FREE...Muscle fiber tone FREE...feeling of self worth FREE. When I get a good song in me and I get on my little trampoline and walk (bounce/jog) I am a different person when I get off.

Now, I have no idea if this is a flare of flares for you....you can get better. This is a wax and wane disease (I refuse to use syndrome). So, are you drinking water and not POP...hydrating those fibers and muscles.???? Go to a spa and get a massage a few times and have them "GENTLY" and tell them gently! Massage the muscles (this is war, so damn them if you are embarassed of your weight) Wear a T Shirt to cover yourself....I work with people up to 450lbs. So I have to say weight doesn't mean health. Some are more fit them the 100lb people I see. They are just fatter....

The masssage will move the congestion in the tissue and it sounds like you need it very much. Look into the book that I use so much. "FM and Chronic Myofascial Pain";by Dr Deving Starlanyl 19.99 on Amazon.com.......SO much information for you in there.

I want to share a mantra I paid 65.00 a visit for "GET MAD not SAD..." when you are pissed at the dragon you become productive. Sad puts you on the couch.

Try hard not to fold up....I will not give this dragon one more inch of me. The doctor tells me "when are you going to accept this is it...?" WELL NEVER, I will move and fight this and not give anymore of me. I respect the limitations and push at times to have a life with my husband, but the small world I have now is big enough for me. That part I accept. SIMPLE.

I wish you were not anonymous...as I can't follow how you are.

Please join us for real and let us in to help you. We can get oou better.....I know it. Half the battle is knowing you are NOT ALONE. Alone and lost is BIG! I was so happy when I found this group as I knew no one with these complaints and I had seen 9 doctors for a diagnosis. As an ICU nurse I am an investigator and it was so hard to be broken and not have a label for myself and a ? don't know the answer so many times...

So....I am on a little 12.5mg of Savella, have you tried savella? It is different it is more norepinephrine then seratonin. If used slowly and with respect it may give you the energy you need and help take off some pain. JUST respect the raising of this med. Don't use the PAK. Some can't tolerate the increased dosing (as I) so just get 12.5's and increase real slow.....
See if the MD will go with this. I feel also alot of depression is because of the pain. How can you be happy in a flare. OUCH!

If the pain is better...your head is better. OK, I will try and watch for you. Small steps will get you there. I KNOW IT.
How is your sleep??? In a recliner? Using heat for a friend on your back and neck? (OMG over 3000 words at this point YIKES!) Keep in touch! Nancy B
 
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Just_a_Scots replied to booch007's response:
Thank you each for your replies.

Right now I am in a bad period. My good ones don't come by too much anymore.

Since I am allergic to the sun (and yes the docs supposedly ruled out Lupus), I have to take 4,000 units a day of vitamin D, to just stay above 30 on the scale. My doctors don't worry about your level as long as you stay above that.

Here are my major problems:
Fibromyalgia
Diabetes (thanks to the weight gain)
Low testosterone (level has dropped even though I am using the gel for TRT)
Sun allergy
Migraines
IBS
Shakes
Exercise induced hives
Asthma
Allergies to most antibiotics
fatigue
Depression
Problems with memory and learning
Sleep apnea (I use an APAP machine)

I have tried savella, lyrica, cymbalta (really hated that one), effoxor, and about 50 different anti-depressants. At best they didn't help. Some of them almost put me on disability just from the reactions I had to them.

I am currently taking:
Metformin 250mg (1 a ay)
cyproheptadine (periactin) 4mg (2-3 times a day) to prevent the hives I get from the sun exposure I can't avoid
singular 10 mg (1 a day)
amitriptyline 10 mg (1 a day to limit the headaches and migraines)
Androgel 1.62 (4 pumps a day for the TRT)
Vitamin D 4000 units
Vitamin C 500mg
Whole foods multi-vitamin (1 a day)
Triple omega fish/flax/borage (1 a day)

I also have on hand:
Flexaril 10mg
Triam/HCTZ 37.5/25 mg (for the swelling in my legs)
Zomig 4mg Nasal (If I get a migrane)

For me this is pretty much the minimum I take. You will notice that there is nothing for the pain or directly for the fatigue. The doctors around here will not prescribe anything other than the anti-depressants for those symptoms, so they do not do me any good.

We only have about 6 rhuematologists around my area, and I am on my 4th family doctor. The first one actually told me to never come back (of course he thought it was all in my head).

The rhuematologists that diagnosed me just through some pamphlet at me and said there was nothing he could do for me and to work with my family doctor.

I live in Iowa so there is almost no choice in doctors around here. We seem to get the lower end of the ability scale when it comes to health care.

Thanks everyone for the ideas. I will try and work through this one again, but it does seem to get harder each year.
 
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Ambersmom97 replied to Just_a_Scots's response:
Hi! This is Chele from freezing NW Indiana. I am so sorry you haven't gotten any support from any doctors,

I just recently really started digging into my fibro to find something, anything to ease the pain and fatigue. I went to the local health food market and from some of the suggestions from others here and the lady at the market, I can tell you what I am trying.

First on my list was the 5-HTP, followed by magnesium malate, krill oil which is proven to out perform typical fish oils, and also informed that if you burp up fish oil you are not digesting it properly and basically wasting your money.
Then I got black cherry concentrate for it's antioxidants, I take 2 TBSP a day.

I also bought a booklet by Pati Chandler called Managing Fibromyalgia - Getting to Know Your Aggravators. It was only $8 and you can find her on Facebook.

She has had fibro for 10 years and done extensive research and has footnotes to back up her reearch. She also lists helpful websites. I found this very beneficial information.

My daughter is 12 and was diagnosed with type 1 diabetes at 16 mos. old, I also have extensive knowledge about diabetes, you can find me on Facebook also, just type in Michele Futrell and I will share anything that might be helpful to you with diabetes because some of the things that help diabetes also help with fibro.

I have also found Ambien helpful for sleep, but with all your med problems you might want to discuss this in depth with your Dr.

I decided at 46 to go back to school, I am 47 now and found it a huge challenge. I cannot live on my meager SSI check and the memory and fatigue make it twice as difficult, not to mention kids, house work, grocery shopping, etc.

But I am learning, slowly, but I have taken on a new attitude and am trying to adjust my lifestyle from a Type A, always on the go and involved in many activities, to one of careful pacing my activities to minimize my symptoms and being proactive in managing my own health.

I hope some of this helps and welcome to your newly found support system.
Many blessings ~~Chele
It's not the years in your life that count but the life in your years. - Abraham Lincoln
 
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booch007 replied to Just_a_Scots's response:
My heart is aching for you. We cannot offer a doctor to go to and (not that I know one in Iowa) but...I wish I had the words you need.

Do you follow your sugars? That Metformen dose is awfully low? If you do not....please get a finger stick machine (they are actually free with the rebates they all offer, and most insurances pay for the sticks. Caring for this is so important.

It is very sad not to see a muscle relaxant and pain med in there. Can you go to a pain management physician at a teaching facility.(big medical center) has to have this.

So many have to travel long to get thei care but it is worth the effort to be treated better and correct.After the established therapy is going well and you are proven by the "specialist" your local MD should follow it and you will need to see the specialist once a year.

I sit here in NY where i have so much at my fngertips and it took 9 doctors for me to get a correct answer and plan of care. I was using chiropractic for the longest time, might that help too?

I feel so for you....And I will call you "just a scots" Thanks for joining with a name.

My email is Booch007@aol.com I have those tapes we talked about if you want them, I can mail em to you and that may get you started. I also took Motrin as my first pain med for years. 400-600mg was my dose. I needed to get off it for bleeding issues so now on Tramadol/Acemetophen 37.5/325. Geez, we need to get you OUT and UP here!!

Email me, and put the FMily in the heading so I don't dump you!....Nancy B
 
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katmandulou responded:
Hi An_243713, and welcome!


My best suggestion for you is to document everything! DO it for a week - when you take your meds, when you have fog, etc. I be live they're all related. If I take my meds late, I'm spacey, but I'm better longer the next day.


Engage your wife to help you. Ask her to do research on the web, and caution her to stick to the real medical site, not "My Fibro Site" places. Medical sites will have good info. Since everyone's different, the "My Fibro Site" info won't offer info you can really use.


Can you walk at night? Exercise is best (not that I do a lot), and it might even help your weight issue. My best friend is morbidly obese and she loves to swim, goes to the Y pool three nights a week.


Check out each rheumy on-line, pick one and make an appt. Do you need a referral to see a specialist? If you do, see your PCP and ask for a referral to the doc you picked. I was lucky, my PCPreferred me quickly and I had just 18 months of awful pain.


Do stop back and say hi. And have the best day you can possibly have!
Lou


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