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12/08/2010 05:38 PM

really need some support

kimberly1
Posts: 55
Member

my doctor thinks i may have cfs, or fibro but i tell u i'm so tired of feeling sluggish no energy and my kids tease me and say i act like i have memory loss, i tell them all the time it's not acting.
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12/08/2010 05:39 PM
kimberly1
Posts: 55
Member

Sad

12/14/2010 09:49 AM
skyrose
skyrose  
Posts: 185
Member

Hi kimberly1 I was just diagnosed with cfs and fibromyalgia and from what I have learned they often go together. I understand the feeling sluggish and the memory loss, foggy head feeling. My doctor has put me on a medication called Savella which has helped me with both the fibro and the chronic fatigue. I'm not a doctor but it is worth looking into. The medicine is known to have side effects like hot flashes and nausea so you would have to start out slow as I did. I have not been bothered with them. I hope you start to feel better soon.

01/11/2011 05:53 PM
thbasile
 
Posts: 2
New Member

I also understand that the bacteria Cpn can cause both CFS and fibro. check out www.cpnhelp.org and see if it makes sense for you to get tested for that.

01/30/2011 01:29 PM
fluffyluggage
fluffyluggage  
Posts: 4722
VIP Member
I'm an Advocate

Hi Kimberly,

You can have either CFS or FMS, or you can have both, they don't always go together, and they are very different conditions. What you describe sounds very non-specific, too non-specific to grasp which condition you may have. If you can describe more symptoms, that may help. With both CFS in particular, there is usually either a bacterial or a viral cause, but with FMS, it's often more viral, from what I've been reading most recently.

However, if your doc thinks you have either/or, what has he suggested as to diagnostics? It's very easy to diagnose FMS. There's a trigger/tender point test, plus a huge list of symptoms that will pretty much say yes or no, right off. For the tender point test, you need to have 11 of 18 points tender in all 4 quadrants (upper, lower, left, and right), and if you do, you can pretty much bet your booty you have FMS.

With CFS, it's a bit more complicated. A lot of docs consider it a diagnosis of exclusion, so they'll test you for everything under the sun before giving you the diagnosis, meaning you need to be tested for a number of vitamin and mineral deficiencies (especially B12, iron, magnesium, and D), get a sleep study to determine if you have any sleep disorders (most of us have sleep disturbances, not the same), assess your diet (if it sucks, you're not gonna feel good), and test for other diseases (things like immune disorders and diseases, etc).

This means going through a number of tests and a number of doctor visits, but if you really want to know what's going on, even though it can be very exhausting, it's well worth it.

Now, CFS itself has a fixed set of diagnostic symptoms that, if you have no other conditions, or if once a condition has been identified and treated and doesn't improve your CFS symptoms, you may be considered to have CFS. These include (but are certainly not limited to, as there are a core set and an extended list of about a ton more!):

fatigue that is medically unexplained, of new onset, that lasts at least 6 months, that is not the result of ongoing exertion, that is not substantially relieved by rest, and that causes a substantial reduction in activity levels. In addition, there must also be four or more of the following:

substantially impaired memory/concentration

sore throat

tender neck/armpit lymph nodes

muscle pain

headaches of new type/pattern/severity

unrefreshing sleep

relapse of symptoms following exercise (aka postexertional malaise) lasting more than 24 hours

pain in multiple joints without joint swelling or redness

Given this definition, you may want to confuse the two, however, please know that they are very, very different, and most people who have both will tell you they know exactly which is giving them trouble. It's a subtle difference, but it's a difference nonetheless.

It can also be difficult to put into words what you feel, but I can only tell you to describe as best you can what you are feeling. If you feel like your bones hurt, tell the doctor you feel like your bones hurt. Don't feel like you're being stupid or saying something that sounds ridiculous. When you find the right doctor, you'll know, because he'll listen to you and tell you he understands, or at the very least will suggest that it sounds like FMS, if you say that.

Also, please know that we're here for you. You can open up and describe your pain to us, and how you feel. We understand. If you need anything, you can always send me a PM or post to the forum. I'm so sorry I'm not here everyday. I have a multitude of illnesses, and I do my best. It's been a while, though, and I'm just so sorry. I'm doing my best to be here far more often. I can't promise to be here all the time, but I'll do my best to be here as often as possible! Smile

Hugs,

jen Smile


02/27/2011 05:30 PM
kimberly1
Posts: 55
Member

Thank u so very much for answering my post, please bare with me I still dont know how to post right. But to tell you more of my symptoms they are: always feeling a overwhelming exshaustion(spell) never seem to get enough sleep even after waking up. My whole body was aching, I thought I was coming down with the flu 3 months ago because I had the runs but I. Wasn't sure if it was my IBS or what. I felt like I was hit by a mack truck sometimes also my mouth is very dry now. My arms be jumping, my shoulders an hips hurt really really bad, my fingers be in a claw position an hurt really bad especially in the morning when I get up my face around my eye browse an mouth is discolored. Also I go from hot an cold. I stay irritable now and last but not least is my memory or a lack of. But I also have diabetes, high BP, high chorlestrol, SVT( a very fast heart rate) an I. Suffer from depression, anxiety. and panic attacks. I feel like it's a laundry list. Lol but that's it:lol ttCheerful

02/27/2011 05:39 PM
kimberly1
Posts: 55
Member

Also my doctor but me on cymbalta an elvavil an I feel much better but from time to time I have theze symptoms but I don't know if it's a flare up or what.

03/02/2011 03:16 PM
fluffyluggage
fluffyluggage  
Posts: 4722
VIP Member
I'm an Advocate

Hey Kimberly,

You could certainly have CFS or FMS or both. But you could be suffering from Dystonia--some of your symptoms are pretty classic, the claw-like hands with pain, the ticks/jumping body parts. The dry mouth could be related to your meds, or it could be a new symptom, but I'd bet it has to do with your meds--I wanna say that Elavil will do that, partly cuz I'm on both Cymbalta and Elavil and have the same side effects.

Tremors and ticks can be caused by FMS. So can the severe pain. However, the pain can also be related to CFS. The exhaustion would most likely be CFS, but it can be from FMS. The reason I'd more relate it to CFS is because you call it "overwhelming," and to me, when I get FMS flares, I don't find that my exhaustion is as overwhelming as it is with CFS. But some people have exhaustion that they feel is overwhelming with FMS, so it really varies from person to person.

If you had gotten a virus that laid you out pretty bad, that can cause CFS, so it's a possibility. But IBS is related to both FMS and CFS, probably moreso to FMS. Cymbalt and Elavil, BTW, are used more oftenly to treat FMS, but can be used to treat CFS on occasion.

Feeling hit by a mack truck is probably more FMS than CFS, though I'm sure some would argue with me. I'm not sure what the discoloration would be from. I haven't really heard that symptom related to either condition, but it could be, I just haven't heard it. I would say that going from hot to cold is more related to CFS, but some people with FMS have it as a symptom, especially during a flare.

Memory problems happen with both conditions, neither moreso, from what I've seen.

It sounds like you have both conditions, and they're primarily treating FMS. However, you sound like you might have Lyme disease to me, cuz you have multiple conditions that relate to it, and I have it as well. You might want to read up on Lyme and check out the Lyme forum. If you don't have it, then all the better, but if you do, then at least you'd know it. Irritability is very much related to one of the conditions called Bartonella, and I have that as well. It's a big deal, and I definitely think you should check that out. It can send you into road rages and all sorts of things.

Hugs,

jen Smile

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