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I'm from Newark Ohio
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freedomgirlnow51 posted:
So frustrated with drs. Was diagnosed yrs ago, but things went downhill after gallbladder surgery 5yrs ago, then lumbar discectomy and fusion last August. I have chronic pain daily! Feel like I need a dr in my corner. Have worked over 35yrs of my life, raised 2 kids on my own, now filed for social Security disability and was turned down before an administrative law judge. My attny had me refile and turned down again. My neck, shoulders, left leg, foot ache so bad, some days I can barely walk. Ibs flare ups, fibro fog and depression. I'm afraid to drive. Take zoloft, gabapenten, trazadone for insomnia, lorazapam for anxiety, muscle relaxers and norco! I am so sick of pills, drs who "don't get me and the whole disability crap...had a mental breakdown In Dec and spent wk in hospital. I don't know who I am anymore! I feel useless! I have beena Christian and in church most my life and now don't leave my house......Is there any hope for me? Any suggestions? Im ready to quit fighting! Help please..
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dollbug responded:
Hello and welcome..MiMi in NC. I hope you have appealed your disability claim. You should IF you have time left and if not then REAPPLY. I would hope that your doctor supports the decision that you should apply for it. This is important. The system is badly broken. We are treated like we are requesting something that does NOT belong to us, but that is not the case at all. You have worked your years and had this benefit and you are no longer able to work so you should be allowed to draw what is yours anyway. Most everyone is denied. Trust me though and DO NOT give up. Continue with your journey. I do know there use to be a 5 year period window for people who apply. You have to work and if you can no longer work, then it has to be within 5 years for you to file your disability. I am not sure this still applies but I know it use to be this way. I have3 also heard that once a person gets to 50 and older that they treat you some what different than those who are under 50. (I don't know exactly how though)


You can do this yourself. I know I have read that people need attorneys to do this but I did not have an attorney and I was denied and appealed the decision myself and then I contacted my state's representative about my situation and I ended up finally getting approved. It took a long time but I did NOT have a choice.


We have lots of good info here..please view it under *tips* and *resources* and be sure and read the *member toolbox* too. I am sure you will find some good *tools* that will hopefully help you cope better. It does take a trial and error process to find just what the body needs and since we are all different...what helps one may or may not help you.


I have been down the road trying different kinds of medicine. I did not find any medicines which helped me so I finally did my own personal research and trial and errors and figured out what would help me cope better. It did take me a long time to do this. I take the following vitamins and supplements and I do other things as well. Fibro Response and Magnesium Malate (found at vitamin stores) P5P (vitamin store) is what I found that helps my lower back pain. It seems that some people have problems breaking down Vitamin B 6 so that the body can use it. (P5P has already been broken down so the body can use it). I had lower back pain and none of the specialists I went to could find anything wrong with me. I also take Omegas and a good multi vitamin with extra D. These are the ones which help my FM pain. I take others for other health issues.


I also use a heating pad which sure helps a lot. I have found that using this around the neck area helps ease my pain in other parts of my body. (I do not fully understand this but I know it works for me).


We, FMers, must have enough rest and sleep and I have found that taking a hot shower at night using lavender bath salts help to relax the body so that I can sleep better. I am still struggling with staying asleep.


Keeping your stress levels low is also important. I have a rough time with this too. There are some things which I seem to NOT be able to control.


Drinking plenty of water every day and watching what I eat also helps. Water is 98% what I drink.


Keeping a schedule of sorts also helps me. Learning how to pace, pace and pace also helps. We, FMers, just learn that we can no longer push ourselves to do things. It just is not worth the effort and the days we have to use to recover from doing this. Learn to say no, especially if you are not feeling up to doing things.


You can also do a daily journal in the beginning if you need help in trying to figure out what you are doing which might be causing you more pain. Chart your activities and your pain level, what you eat and drink. Soon you might find a *pattern* and figure this out.


I hope you will soon find something that will help you cope better. We are here 24/7 and this is a really good support group to be a part of.


Take care.




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

 
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Anon_10089 responded:
Hello and sorry for what you're going through. You're not alone in what you're experiencing.

Unfortunately, living with FM means the possibility of daily pain, lots of pills (even if they are supplements/vitamins), and often ignorance by others. Sounds grim? Sometimes it is and I think all of us have dark days. But it can get better!

Hmm, if you are in Ohio, you're in the same state as one of the leading doctors in FM research and treatment. He actually used to post here and he actually also has FM. His name is Dr. Mark Pellegrino and his practice is out of the Ohio Pain and Rehab Specialists. If you google that, you'll get to its website. I looked, and there's an office in New Philadelphia, which is about an hour from Newark. If you could go there, I would highly recommend it.

A big part of FM is the mind games it plays on us. Personally, I think people with FM have to figure out their own new normal and new identity. You simply cannot compare yourself with what you used to do. Instead of feeling bad for what you didn't accomplish, feel good for what you did do, even if it was getting dressed. We should have an immense amount of respect for ourselves for what we do while we're in the pain we are in! The pain is going to be there, that may not change. Our perspective can change. (And I know all this is way easier said than done!)

You raised kids and worked for many years. You are not useless! Both of those things are major accomplishments. Now you are dealing with a health issue. Keep at it with the disability. FM was added to the list of valid conditions a year or two ago.

There are no easy answers with this condition. But this place is great for both information and support. I hope things can start getting better for you!

--JR
 
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freedomgirlnow51 replied to dollbug's response:
Thank you MiMi so much for your kindness. I have written down the vitamin names for the next time I go to the health food store. I'm not giving up on the SSD, but it's so frustrating..Some days I just don't know what to do with myself. Everything I do, my body seems to ache. I did get the name of a Dr. from Anon, another fibro-friend that I am trying to get an appt with. Dr. Pellegrino. I feel like most of my other drs just don't understand. What is your typical day like? How many days out of your week do you feel down? What do you do for insomnia? Sorry....just wondering?
 
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freedomgirlnow51 replied to Anon_10089's response:
Thank you Anon for your response. I'm so glad I found this site and for the helpful info I have been getting. I have left a message at Ohio rehab and pain specialist. I'm excited to maybe speak with a dr that will understand what I am going through...Do you know, I went to my towns new Rheumatologist and was telling her about my forgetting things and fibro fog....she did not have a clue what I was talking about. She said I should go back to my primary care dr and see if I need some tests done for alzheimers. I couldn't believe it....anyhow, Thank you for telling me about dr pellegrino. Is there any drs on this site that answer any questions? I will let you know how it goes. LJ
 
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Anon_10089 replied to freedomgirlnow51's response:
Hello-

I'm glad you have a message into the place in Ohio. I hope they can help! We don't have doctors here anymore who can answer questions. However, Dr. Pellegrino participated in many discussions and gave tons of information. Here's the link to his profile: http://exchanges.webmd.com/fibromyalgia-exchange/groupstory/14317490

Once there, click on "Discussions" and I believe all the discussions he was in on will come up.

--JR


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