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Old 08-26-2011, 01:04 AM   #1
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Unhappy Multiple Sclerosis vs. Fibromyalgia

Pretty sure I'm going to make someone mad, and I really don't mean to, I promise. I'm new to the message boards, and I certainly don't want to start a fight. I'm just wondering what everyone's opinion is about Fibromyalgia. Up until a few months ago, I thought fibro was closely related to MS. Recently, though, I read more about it and found out that there is no real way to diagnose or even know for sure that fibro even exists. I guess it bothers me that there is so much "sympathy" for those who say they have fibro, when people who say they have MS get treated like leppers sometimes. Fibro is even an automatic disability acceptance, when MS'ers have to fight all of the time to get approved. I know my MRI shows lesions galore, some of them are causing seizures. I had greater than 5 bands in my spinal tap, and my brain stem has been totally inflamed from MS at least twice this year. I hate that others compare me to someone who has a disease that may or may not even exist.

 
Old 08-26-2011, 02:06 AM   #2
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Re: Multiple Sclerosis vs. Fibromyalgia

Fibro is not closely related to MS, although, you can have both MS and Fibro. When diagnosing Fibro the doctor is looking for 12 trigger points (of pain). In MS we can deal with pain but MS does not have trigger points. I am not that familiar with fibro so I cannot comment about the ease of getting or not getting approval for SSD. The problem getting SSD with MS, especially early on in the disease process, is the patient can improve.

I am sorry you are having seizures I can't imagine what it's like. I am not sure why anyone would be comparing their fibro to your MS If possible, maybe you should distance yourself from those people. Life is way too short to allow self-centered or negative people into your life.

How long have you been diagnosed, MSSUCKS? I do agree...MSSucks
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Old 08-26-2011, 07:27 AM   #3
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Re: Multiple Sclerosis vs. Fibromyalgia

For each disabling disease there are criteria in place for the approval process. If you go to the SSA web site, you will find the checklist for MS. Do not provide more than the checklist requires because the initial phase is managed by pencil-pushers who only know that they have a checklist to review. I had 20 good years with MS before it finally worsened to the point of going on disability. Were I able, I would love to still be working. But God has sent me down a different path and I have been richly blessed.

As to the seizures, I went through the MS seizure cycle and it is not fun. I was bed bound for about 6 months as a result. I also did not drive until 6 months after my last seizure. The good news is that the cycle has an end.

My neighbor has fibro and her fibro was debilitating enough to cause her to go on disability. My sister has fibro. She had to give up her medical practice because of the meds she takes, but she is now teaching college. Fibro does not always end in disability just as MS does not always end in disability.

The process for disability approval is only going to get more difficult as the SSA is flooded with people claiming disability because of unemployment. The other difficulty is that the process is stagnate in some states. In Kansas they process was running about 2 years behind.

I do hope you are able to get to where you are going in life. Stay calm and keep going one day at a time. We are all in this together.
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Old 08-26-2011, 09:49 AM   #4
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Re: Multiple Sclerosis vs. Fibromyalgia

I think people are comparing it because they just don't know. They'll say "oh yeah, you have MS?? My so and so has fibro." It drives me insane!!! I think there are people who genuinely have fibro, but I also think fibro is easy to fake. I was lucky enough to get approved for disability first try, within 3 months of applying. Part of the reason for this was because of the seizures, though. I have gone downhill SO fast in the past year. Even on the disease modifiers, I've had 6 relapses in 10 months, and I don't see an end in sight to the cycle right now. I hate it. I'm trying hard to get through it all, and luckily I am blessed with a wonderful support system in my friends and family. It's the ones who don't care enough to know that really make me mad! I'm just going to remove them from my life. I don't have time to deal with ignorant people anymore. Thanks for the replies and kind words!! Hope you all have a great symptom free day!!!

 
Old 08-26-2011, 11:27 AM   #5
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Re: Multiple Sclerosis vs. Fibromyalgia

The MS seizures sap the energy from the body and leave you with little. Still, from bed many things are still within your grasp. For part of the time I was stuck in bed, I was busy reading my Bible and watching TV. TV has the ability to zero brain activity which is actually good because your brain needs the rest to recover.

I have a service dog who alerted my family to my first seizure and alerted every seizure thereafter. I did not think my cycle would end. I figured I was nearing the end of my life, but God had more for me to do.

I am glad you got disability. The income each month, though not much, allows the financial worries to be pushed aside.

In your lifetime you will meet people who will look down on you and others who will have pity for you. Neither of these groups will ever go away. Please do not be mad at them, just avoid them and let them and any words from them roll off your back like rain on a duck. Getting mad means you develop stress which only compounds your problems and can make your MS worse.

People may compare fibro to MS because they see fibro in the news. MS is even difficult for some doctors to understand yet alone, diagnose. Fibro is much easier to diagnose then MS which requires a gauntlet of tests to diagnose.

I will keep you in my prayers.
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Old 08-31-2011, 10:50 PM   #6
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Re: Multiple Sclerosis vs. Fibromyalgia

As a fibro sufferer i assure you it is very real. Oh how i wish it were not so real. Maybe then i would not be so affraid of the future. Also i would not be facing surgery for a pain pump. Sorry you feel cheated , but i think you have been misinformed.

 
Old 08-31-2011, 11:38 PM   #7
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Re: Multiple Sclerosis vs. Fibromyalgia

I think I should have clarified maybe. I think it is real. It's just not anywhere close to MS. MS makes your bladder stop working, your swallowing go haywire, etc. Your entire body is controlled by nerves, and MS makes them stop working properly, so eventually, yes people can die from MS complications . I know that fibro is very painful. I just think it's easy to fake it. I know plenty who do. I also think it's ridiculous that anyone with fibro feels like they can compare it to my situation. Worse thing I can hear is "oh, yeah! I have fibro! I know how you feel!" when I tell someone I've been diagnosed with MS. To me, it's like comparing a hang nail to having your arm cut off.

 
Old 09-01-2011, 04:00 AM   #8
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Re: Multiple Sclerosis vs. Fibromyalgia

MSsucks,
I think its really important to point out that people do not die from MS complications now that they have so many drugs which are able to treat symtoms. And a significant amount of options to prevent MS from progressing has also made a difference statistically in the disability rate for MSers.

I also think its important to point out that very few people have swallowing complications and not many people have extreme bladder complications. YES. Both are possible symptoms of MS. But so are optical Neuritis, migranes, neropathy and heat sensitivity, none of these things are life threatening.

Pain is pain. Whether its MS pain or Fibro pain, and if you have that type of pain, its very possible that "nothing" compares with what the patient feels. Some of us have higher pain thresholds than others, and some of us just cope with the disease better than others; but I dont think its fair to say that there is no comparison. There is, it just shouldnt be which one is worse!

I have friends with Fibro who suffer badly. I have friends with MS who take absolutely nothing and never complain. And, I have friends with MS who are in wheelchairs unable to walk and on disability. The disease is very individual and it wil not strike all of us exactly the same. BUt I think its really unfair to say that one is worse than the other.
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Old 09-01-2011, 12:26 PM   #9
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Re: Multiple Sclerosis vs. Fibromyalgia

Quote:
Originally Posted by MSSUCKS View Post
I think I should have clarified maybe. I think it is real. It's just not anywhere close to MS. MS makes your bladder stop working, your swallowing go haywire, etc. Your entire body is controlled by nerves, and MS makes them stop working properly, so eventually, yes people can die from MS complications . I know that fibro is very painful. I just think it's easy to fake it. I know plenty who do. I also think it's ridiculous that anyone with fibro feels like they can compare it to my situation. Worse thing I can hear is "oh, yeah! I have fibro! I know how you feel!" when I tell someone I've been diagnosed with MS. To me, it's like comparing a hang nail to having your arm cut off.
It is difficult to fake a nerve disease due to the highly sensitive equipment doctors have, BUT there will always be those who try and a small percentage might make it. MS may or may not bother your bladder, etc. The symptoms vary from one person to another.

As to fatal conditions, there is a rare variant of MS- the Marburg Variant. Marburg's Variant of Multiple Sclerosis is a very aggressive form of MS where the disease advances very quickly and relentlessly. It is associated with severe axonal loss and leads to rapid disability and death. It is also known as Acute or Fulminant MS. Please remember that this is quite rare.

You might have met some people with fibro who claim to know how you feel. When it comes to nerve pain, they probably do know how you feel. I think that those with fibro or MS OR both can empathize with the plight of the invisible disability. I use a service dog and I need sunglasses- to those who do not know me- I am called blind. I dismiss these people and live my life one day at a time.

I think that MS is a difficult disease with which to live, BUT it does not have to rule my life, nor control my life. I often will tell people that "I locked my MS in the closet". That is what I place in my mind. MS sent me to a pity party in 1982 which lasted about 3 days. Pity parties are no fun and it only allows the MS to control our lives and ruin or lives too. I would encourage you not to allow other people to upset you.

I would also encourage you to have your personal "Fortress of Solitude". I think this should be a standard plan for all MSers. For me I can retire to my room and shut the door and pray or sleep or whatever I need to do to rest my body and mind. Without recovery I would not be able to help my family or myself. I wish peace for you. You are still in my prayers and your screen name is still true! (Just do not let MS hold you back!)
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