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ratdog

New member
Joined
Oct 21, 2013
Messages
6
Diagnosis
06/2012
Country
USA
State
NC
Well, it has been almost two years, I have gone from being muscular, full of energy, working fulltime, to being reduced to a parasite. I had to quit my job, I am very, very tired and my feet, ankles, knees, hips, middle of my back, and sometimes my neck hurts. I turn 50 in a few weeks. Since age 18, I have always had a fulltime job. I have never been unemployed. Dr told me I have Fibro/CFS, I tested positive for Crohn's, high blood pressure, hypothyroidism, hypogonadism. I feel worthless. Body and mind. Last dr visit, because my knee's, ankles, & feet hurt all the time, and my knee's make a very loud crunching sound when I bend my legs, she ordered x-rays of knee, ankle, and foot. Today, the results are in. All came back perfectly normal. No problems showed up at all. My question, does fibro or cfs cause any damage at all to joints that would show on x-rays? My dr told me to apply for ssidi and I said no, I want you to find what is wrong and fix me. We are getting close to losing everything, wife is working extra, and it seems we do not qualify for any help, even though we have four children. So I applied, only to be turned down 12 weeks later. So, can I really have fibro and show no evidence of damage on x-rays? Thanks for your thoughts.
 

tracy45

Member
Joined
Sep 2, 2013
Messages
19
Diagnosis
10/2012
Country
CA
State
Alberta
It is true that fibro will not show up on x-rays and they say it does not do any damage to the joints. It just feels like it! I hope your dr put you on some thyroid meds for your hypothyroidism. I did some research and there are a lot of doctors who recommend thyroid meds for fibro, even if your tests show in the "normal" range. I had to get a new doctor just to get a low dose and it has helped me. I still have symptoms and aches but I don't have that "my feet and legs are encased in cement" feeling anymore - I feel a better limberness (if that makes sense). Do your own research to see what you can find for your symptoms as everyone seems to be different and yet the same.
 

ratdog

New member
Joined
Oct 21, 2013
Messages
6
Diagnosis
06/2012
Country
USA
State
NC
I take 75mcg each morning of synthroid for hypothyroidism. 5mg of prednisone when crohn's flares. And testosterone injections every 5 days for hypogonadism. I can do some mild to moderate work when I feel well, only to be knocked down for 3 to 4 days. You never know when the good day will come. Very hard to sleep or rest. Makes me hurt to sit too long, or stand, or lay in bed. This whole thing of not knowing when or if this will pass, or how we will survive, just makes it worse. Then, you have people look at you and say, "You don't look sick, why don't you go back to work?" They have no idea how bad that hurts. I worked hard full time over 30 years, and now some days I can hardly get out of bed.
 

jcairns82

Active member
Joined
Oct 9, 2013
Messages
82
Diagnosis
02/1993
Country
Ca
State
Canada
Hey ratdog, what a frustrating situation that you're going through. The transition from strong to weak can be quite devastating. I wonder if even moreso in males sometimes.

Unfortunately, as others have stated, fibromyalgia won't show up on a scan and is why many of us don't get diagnosed or were deemed as lying about our condition.

I hope that you're able to find some solution to managing the pain, as there are many of us who do lead successful lives. It's difficult, but possible.
 

momsalittleoff

New member
Joined
Oct 16, 2013
Messages
2
Diagnosis
04/2006
Country
US
State
CA
I know the feeling of wanting to work and not be on social security. I went through that as well. I ended up trying several times before I appealed and threatened to find a lawyer, then was awarded it. I still want the doctor to do what he can so that I can work again, but at least, in the mean time, I can take care of my son and I. I was told by a worker at the social security office that almost everyone gets turned down the first time they apply.
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Hi Ratdog! So sorry to hear you're going tru such a difficult time... sadly a lot doctors are totally ignorant when it comes to fibro. They think you're crazy and making things up when you tell them you're in so much pain, but your results are perfectly normal. It's heart breaking... and I totally relate to that feeling. Everyone thought I was crazy because even my MRI and CT scans were on the normal range, but I felt like crap! A lot people think fibro is just a myth; it doesn't exist. Your story isn't uncommon at all!

Another reason they don't want to help you, could be because you're a man, and fibro is not a very common diagnosis for men, Actually most fibro sufferers on this forum are women (me included). Hang in there, I know that's not easy, but we have no choice :( Just try to find the medication that works best for you, hopely you'll be able to get your life back after that.
 

ratdog

New member
Joined
Oct 21, 2013
Messages
6
Diagnosis
06/2012
Country
USA
State
NC
So many emotions. Fear, anger, and so on. At this point, I have to hope someone with social security will consider I am 49, worked part time ages 16 and 17, by age 18 I worked always 40 hr, week, sometimes a little more if needed, sometimes a little less if I took time off. I have never had to sign up for unemployement, workers comp, or any kind of disability, but now, when I really need some help, I get turned down. I did get an attorney to represent me, and file for me, my brain can no longer function like it used to with math or paperwork. I have always enjoyed filling out my own income tax returns, until 2 years ago. I could no longer concentrate well enough to do it. My attorney says we will ask for reconsideration, but I have no new medical info to add except my dr ordered xrays of knee, ankle, and foot because I have so much pain in those areas. All three areas came back completely fine. Attorney says we expect to win your case when you go before a judge for a hearing, but that could be a long time from now. I have sold everything I could of value to pay bills. I went to BOA to try and combine my 1st mort. and my HELOC, and refi for 30 years, making the payment much less. Our credit is still really good so far, my score was 748. They told me since I was current on all loans, they could not help me, but she said if I let pmts go 60 days past due, she could help me. They said her name was "Tan" I think she was just going to help me ruin my credit score. So how am I supposed to survive during the "wait and see" time? Sad to say, but it looks like my wife and children only sure hope of getting a monthly check to keep the house and pay bills would be if I were dead. Surviving parent gets a check based on how many children under 18 she is caring for. Wish there was a blood test for fibro and cfs
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
Welcome to the forum. It sounds like in addition to being in pain you are under a lot of stress. The one thing that compounds fibro, making it worse is the lack of a good nights sleep. first off I would suggest you try and find a fiber bed pad. This is not a regular mattress pad, in fact it is totally different. These pads come in all sizes for beds from twin to king. They are about 2 1/2 to 3 inches thick and lay under the sheets on top of your regular mattress. This fiber cotton pad will give you extra cushioning for your sore muscles in your back and hips, and legs. In doing so your muscles will relax and you will feel like your sleeping on a cloud. If you can not afford one right now, use a thick cushioned bedspread and if necessary double it and place under your bottom sheet. It really does work.

As far as SS disability goes mostly everyone gets turned down the first time. You must appeal the decision and keep appealing everytime you are turned down. Of course this means doing that paperwork over and over, until your sick of seeing it. Try and try again until you get it.

Lastly it is not the joints that suffer with fibro, it is the muscle fibers. So it causes different types of pain and of course weakness. Have you been seen by a Rheumatologist? this is the type of doctor that can provide the best care and treatment for fibro.

Stress levels must be reduced in order for your muscles and body to relax. Please read the posts that are on pain management and general questions about fibro. You will find lots of coping skills to help you manage your symptoms. Please ask more questions so members can offer you good advice. Glad you found this forum. :)
 

ratdog

New member
Joined
Oct 21, 2013
Messages
6
Diagnosis
06/2012
Country
USA
State
NC
I have been to many, many doctors. It all started a little over 2 yrs ago. We have two handicapped adult male children. Our children are yours, mine, and ours. We love them unconditionally. Two 28 yr boys, one 24 yr boy, one 11 yr old girl.

My 24 yr old lived with his mom for 5 yrs. Courts gave her primary custody. He would cry at age 9, 10, 11, 12 when it was time to take him back to his bio mom. Drinking, pills, many different men in the house, mentally and physically, she was not there for him most times. My attorney could not help me get custody till he would say "I want to live with Dad" With him living in that hell, he now has PTSD, OCD, Panic Attacks, Intrusive thoughts that scare the hell out of him. There is more issues, but you get the point. When my wonderful 2nd wife and I got custody, we took him to many psyc drs. He was admitted several times to a unit. So far, admiited 12 or 13 times. My heart was broken and I just wanted to die when a dr called me and said "For the best interest and safety of your son, and your family, we have decided your son cannot come back home. He was placed in a home, against his will. The darkest day of my life. I went thru many years of hate toward his mother, he has never to this day told all that he was exposed to. His mothers mental issues ran so deep, after 14 yrs of marriage, she asked if I ever wanted another child, and I said yes, I had often dreamed of a daughter. So after many years of very little bedroom activity, we got "Busy" Two months later, preg. test said yes. Our 1st dr appointment, her dr said, at 38, the first trimester you must be very careful, past your 4th month, you will be fine, just try not to be lifting really heavy objects. Fast forward 5 months, I come home 3 days in a row to a defiant woman that has haul almost 2 cords of firewood to our house. She was very quiet for days. Got a phone call from dr office to come get my wife and take her to hospital, she had sat, bleeding, in the wainting room for 3 hours to make sure she had got things messed up real good. Stayed in hospital 11 days, during this time nurses had been telling me, prepare yourself, her water is broke, and the baby cannot survive. I got a casket, my church gave me a plot, all the while wife would not allow visitors or talk with me about our baby. Baby comes, it's a girl, beautiful. She moves a few seconds, and she is gone. Wife never looks at her. I tell her I have a service planned, she says NO, let the hospital take care of "IT" I protest, but am told its the mothers choice. She was burned in the hospital incinerator. No, we flash back to my son years later being put in a group home, I had neglected taking care of myself, plus who could afford it with all the debt I inherited from my failed marriage, 1st wife even went and got a "boob job" on a credit card before she left. Two days before Christmas, two years ago, my jaw swells, and I am in pain. I find a dentist that would see me and he tells me I have 2 abcessed teeth beside one another, top, right, rear molars. He has to cut them out. Three weeks later, I go back for two more extractions, only one absessed this time. I was on antibiotics both times. Losing my son, and the dental issues all were inside a 5 month window. That January and Feb, I used up every sick day I had accumulated, plus took every vacation day I had. I spent most every one of those days in the bed or on the couch. I hurt all over. It hurt to stand, walk, sit, lie down. No matter how much I slept, I still felt worn out. I have been to so man drs. Four in fact, are endo's. They all checked my thyroid, all said 75mcg of synthroid had me right in the middle, and that was good. My GP sent me to hospital lab down the street. They checked blood cortisol levels at 8AM reading .4 then again at 2PM reading .3 and again at 8PM .3 Bingo! they think I have addisons, off we go to a new endo, she does a test where she checks 8AM blood cortisol level, it was 12.7, then injects me with cortrocyn? and it goes ups to around 17. She says I have mild adrenal insuff. And with thyroid on low side and gonads too she said something about polyglandular. She prescribed 5mg of Prednisone each morning. It did nothing at all to give me my energy back, but did push my BP even higher. She wanted to see me in 90 days. I was unhappy, made apt with 2nd endo, he said my thyroid tests looked good, continue with 75mcg of synthroid. He said he would like me to try hydrocortisone pills instead of prednisone. I started 30mg per day. after several weeks, no change in energy, but blood pressure up, and my IBS or Crohn's was not bothering me at all. During all this, my GP had set me up for a colonoscopy, my urologist said he felt a 2mm bump on my prostate. Procedure went well, no signs of active Crohn;s but many benign polups were removed. No lump or bump on prostate. Always have had really high BP, and the hydrocortisone was not helping it a bit. I was sent to adrenal specialist in Charlotte. He looked at all my tests, ran a cortrosyn stim test of his own, and said you may have adrenal function on low side of normal, but you must stop taking the hydrocortisone. You do not need it. That helped BP come down a little, but started my IBS or Crohn's back really bad. My GP found several blood tests she was able to do that confirmed crohn's along with my symptoms. I have not cut corners on dr's or tests, I really want to be well. One other test that may back up the fibro/cfs diagnosis, my sleep study showed no sleep apnea, but it did show that I never enter that realm of sleep that doctors say folks with fibro never get. I have about exhausted all resources, if you have another idea or question let me know. Thanks for all the response
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
Is there any chance at all that you might be suffering from PTSD? Please don't take this the wrong way, but from all the bad things that have happened in your life, it is a real possibility. PTSD can cause feeling of pain and depression, and loss of hope. If you have a good doctor now ask about a referral to a good mental health counseler. If your luckly your town may have a local clinic that charges by sliding scale. This means if your income is low the cost will be very little out of pocket. If you have had dealings with those type of people pick another town close by. There is medication for it, but honestly the best part of treatment is having a trained counseler to talk to and help you to work through your anger and fears. Getting this kind of help is nothing to be ashamed of and is much different in respect to your first wife's condition.

That said there is no test that proves fibro, only the good test results usually point toward it when everything comes back negative. I went through that stage you are in where all I wanted was for this condition to go away so I could get back to work. I spent a lot of money and saw lots of doctors and finally was diagnosised with fibro. What I have learned is doctor chasing only wasted money I did not really have to spend. The most important part in having fibro/CFS, is managing the symptoms.

So you need to explore the safest pain medications. Your stress level is very high and you need to tone it down. I would suggest that you start a new hobby or pick up on an old one. Try to do relaxing things and get your mind of the fact you can not do the work you did before. Read my blog post #7, to get ideas on earning some money from home. Did you know there are places online you can sell books or dvd's, or pc games? Find a blogs online to write for. Are you good with computers, where you could take a online course to brush up on old or new skills that would help you get another job?

Most of all forgive yourself for all that has happened. It was not your fault. Try to have patience and courage to handle this problem one day at a time. I hope this helps in some small way. Please continue coming here and read as many posts as you can to learn more coping skills. Ask more questions and we will all try our best to help you. Don't forget we have a groan and vent topic when everything is going wrong.

Glad you are trying to help yourself in meaningful ways. Don't give up on yourself. Hope you have a better day tomarrow. :)
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
So many emotions. Fear, anger, and so on. At this point, I have to hope someone with social security will consider I am 49, worked part time ages 16 and 17, by age 18 I worked always 40 hr, week, sometimes a little more if needed, sometimes a little less if I took time off. I have never had to sign up for unemployement, workers comp, or any kind of disability, but now, when I really need some help, I get turned down. I did get an attorney to represent me, and file for me, my brain can no longer function like it used to with math or paperwork. I have always enjoyed filling out my own income tax returns, until 2 years ago. I could no longer concentrate well enough to do it. My attorney says we will ask for reconsideration, but I have no new medical info to add except my dr ordered xrays of knee, ankle, and foot because I have so much pain in those areas. All three areas came back completely fine. Attorney says we expect to win your case when you go before a judge for a hearing, but that could be a long time from now. I have sold everything I could of value to pay bills. I went to BOA to try and combine my 1st mort. and my HELOC, and refi for 30 years, making the payment much less. Our credit is still really good so far, my score was 748. They told me since I was current on all loans, they could not help me, but she said if I let pmts go 60 days past due, she could help me. They said her name was "Tan" I think she was just going to help me ruin my credit score. So how am I supposed to survive during the "wait and see" time? Sad to say, but it looks like my wife and children only sure hope of getting a monthly check to keep the house and pay bills would be if I were dead. Surviving parent gets a check based on how many children under 18 she is caring for. Wish there was a blood test for fibro and cfs

Hey, I know what you're going tru is really hard, but you must try to stay optimistic. I know things look really dark right now, but it always is like that in the beginning, hopely things will get better after a while.

You just need to have faith and wait, I know how hard it is to live in uncertainity (been there), but believe me... your family needs you! You might think they might be better off if you die, but no...! They need their dad! This is just a temporal thing! Try to focus on the positive side; your lawyer said there is a huge change you win! I know it's hard, but you have to wait.

It sounds like you're very stressed... did you know stress affects your fibro even more? You should try taking something to calm your nerves. I had to do that! I don't know what I'd have done without Xanax...!
 

ratdog

New member
Joined
Oct 21, 2013
Messages
6
Diagnosis
06/2012
Country
USA
State
NC
New Sleep Study Results.
I am 6'3" 234 lbs, fatigued or extremely tired all the time, have had high blood pressure since age 19, now 49. I addition to the pain I feel all the time, I have Crohn's, hypothyroidism, hypogonadism, anxiety, fibro and depression. I take prescribed meds for all of these issues.
Results of sleep study, or polysomnogram.
Sleep onset was long being 39 1/2 minutes. Patient entered REM sleep late in the night after 306 minutes of sleep onset. He slept for 5 hours and 6 minutes and recording time was 6 hours and 21 minutes with a sleep efficiency of 80% of total in bed time. His sleep effiency was moderately reduced.
Patient slept in supine position mostly.
Stage I sleep was normal at 8%
Stage II sleep was increased at 64%
Stage delta sleep normal at 17%
Stage REM sleep was decreased at 11%of total in bed time.
The patient also had 75 minutes of wakefulness after sleep onset


The patient overall had no evidence of significant obstructive sleep apnea syndrome with an apnea/hyponea index was normal at 3.1/hour. T total of 15 hyponeas and 1 apnea was recorded.
On the oximetry channel, he was less than 90% for nearly 115 minutes, with the lowest oxygen sat being at 71%

Impressions
1 No evidence of sleep apnea
2 Difficulty initiating and maintaining sleep with frequent awakenings.
3 Moderate to severe nocturnal Hypoxemia.

Recommendations
1 Cardiopulmonary disease needs to be ruled out.
2 Overnight oximetry to see if patient needs oxygen.

Does this test indicate fibro or cfs to anyone?
 
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