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Discussion Starter · #1 ·
Hello everyone,I know the subject mentioned a lot of things, but I did that to get the attention of those with experience with any of these. I need some advice, I have already been diagnosed with Endo, IBS, IC, etc...just to name a few but I have always had a lot of body pain.I constantly have back pain, especially lower back pain (tender spots that can't be touched) and neck pain....pretty much my body aches everyday. I don't know why b/c I'm not working now or doing anything physical b/c of pain and health reasons. For a while I was working out 3 days a week and I still had the pain. Also when I go outside, even if I'm out just for a little while, I get extremely exhausted and worn out, as if I just ran a mile and my waist kills me, I've gone as far as sitting on the floor of a department store b/c the pain is so bad in my waist and back that I need to sit....ugghh!I know I shouldn't be feeling like this and about 2 yrs ago I saw a neurologist and she did a brain MRI, and blood test workup and they came back normal. She said I had Chronic Fatigue Syndrome.....my question is this. Does CFS go away, or do u always have it? Could that explain my exhaustion? Is there anyone I can talk to about this? I'm in the process of finding a new internist b/c the one I have just brushes me off all the time and tells me to just exercise more and not think about it. Would an internist be able to help me?The neurologist just gave me different pills at the time....amtryptiline(sp?), nortryptiline and something else and basically sent me on my way and said there is nothing else she could do for me. I also asked her about the body pains and tender spots that I have and she said she didn't know what was causing it, I feel like an old woman and I'm constantly using my homedics massager even though it doesn't do much for the pain, just feels good.I've read up on Fibromyalgia also and noticed my symptoms are similar, but I still don't know too much about it. Anyone with it have any opinions?Every doc I've asked about my tender areas (very lower back, one each side, mid back and around the neck) and just a general all over body pain, have blamed it on something else. Some have said to do physical therapy, some say it's related to the endo, related to the IC, related to foot problems (I have plantar faciitis sp?). I don't know what kind of doc will actually take me seriously and listen to me.I've been on pain meds(vicodin, tylenol with codiene, darvocet, naproxen, muscle relaxers...etc) but none of them help for the body pain at all. On a side note my gyn gave me celebrex for pain....has anyone taken this for pain....does it help? I know they give it to arthritis patients. Are there any pain meds that anyone could suggest that help?I can't stand for long periods of time b/c I get exhausted and back and waist pain become unbearable, and it's embarrassing to go out with friends who don't really understand ..and I have to say, "I'm getting tired and in pain can we sit" they don't mind, but I have to really limit my activity which is hard at 23yrs. old, you're expected to be active.Sorry this is so long, but I really don't know what to do and some advice would be great...I'm desperate......Thanx for listening
 

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Discussion Starter · #2 ·
Sorry my post looked so wierd I copied and pasted it from another application that I initially wrote it in. I didn't realize it would look like that until now
 

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Hi Bkisis
Welcome to the forum. Have you ever been to a rheumatologist? (sp?) That would probably be the best kind of doctor for you to go to about this "stuff". I'll try to answer some of your questions. CFS doesn't just "go away", although, it is a cyclic illness. Going through various stages, sometimes symptoms worsening, sometimes getting a little lighter, and sometimes, for a lot of people going into remission for a while. And, YES this would explain your exhaustion. The places I go to talk about this kind of stuff are bulletin boards. In some towns you may be able to find a support group too. An internist may be able to help you, I'm seeing one now who is into some holistic and "alternative" therapies. The most important thing is to find a doctor you can talk to and feel comfortable with, and a doctor who listens to you and keeps up with the latest CFS/FM research. Sounds like the neurologist started you on all the "normal" basic meds. Though, for most people, they have to work for years before they find the combination of drugs/meds that works for them. Some people never find the meds that can help them. (hate to sound doom & gloom, just trying to be realistic) As far as CFS and Fibromyalgia goes - there are many schools of thought on this. Some doctors think they're totally different syndromes. Some doctors think they're different names for the same syndrome. Personally, I'm not sure where I stand on that. But, one thing is true, many of the symptoms do overlap, and each individual who is diagnosed with CFS or FM has a unique experience with the disease. My advice would be to find a rheumy in your area, perhaps even try to find a "pain clinic". (they specialize in cutting edge ways of getting rid of pain) Now, onto the Celebrex. My gyno gave me Vioxx many years ago for Endo. I find if I take it early on (before the cramps actually get bad) it does great for the cramps. I've found it helps my pain from sciatica sometimes too, but doesn't help my FM pain. I mention Vioxx because it is in the same family of drugs as Celebrex (targetting the Cox2 enzyme). It is (for me) very effective with the Endo pain. I have not yet found any meds that help with the CFS/FM aches and pains. A lot of people have success on antidepressents. The most important advice I'd give is focus on your sleep. Make sure you are getting as much sleep at night as you can. Most of us take some sort of sleep aid, so you may want to look into that too! Ok, I hope I got to most of your questions and didn't ramble too much. Again, welcome to the board. (BTW I'm 24 - We've got a lot in common!)
 

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Discussion Starter · #4 ·
Thanx mrsmason, Your post was extremely informative and appreciated and I will take your advice on seeing a rheumatologist(sp?). I was hoping someone would shed some light.....I guess ppl didn't feel like reading so much....but I'm glad u did! I really appreciate the info on CFS...I thought that maybe it was cyclic and would explain why I didn't feel so bad before but feel worse now, as far as exhaustion goes but my doc never explained that to me
I've been trying the celebrex but it doesn't help with the pain, just makes me tired
Is it something that works over time? Or could the CFS be contributing to the med making me tired? (mental note: ask doc that)lolI will still look for an internist b/c I do want to have a doc keep up with my overall health, plus I need a doc who will follow up with me (have some cardio probs) and been having chest pains. Now I'm onto to grueling mission of finding more docs...
and hopefully get some answers. Thanx so much for the support and info :love:
 

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Discussion Starter · #5 ·
BTW...I also forgot to mention that I did try Vioxx at one point about 2yrs ago but it didn't work for me. It gave me an upset stomach and I starting throwing up. So hopefully I can find something else. Oh yeah, I do get a good amount of sleep, I was using sleep aids at one point but I don't need them anymore thankfully. Thanx for everything ....from one youngster to another
 

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Good! It's a long road, but it is traversable!
Best wishes on your journey!
 

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HI bkisis. MrsMason send everything so well
I just wanted to emphasis what MrsMason said about it being cyclic. I get it in a relapse and 'relative' remission pattern - I'm in my 3rd relapse but have had 100% remission between the first and second episode, and 80% remission between the second and first episode. Just wanted to let you know that it's not unusual for your symptom severity to wax and wane over time, or even go away completely for a while and then come back again. I go into relapse after viral illnesses. Are you still taking the amitriptalyine (sorry, I can never spell that one)? That can help with sleep and pain if necessary.
 

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Discussion Starter · #8 ·
Hey Susan, Yeah, when I think back I guess I was in remission on and off b/c I remember times when I felt ok and times where I felt like I was going to pass out from exhaustion. I'm still learning about all this and it's very frustrating dealing with new possibilities of more strange illnesses. I'm still trying to get a hold of my IBS and endo
I'm not taking the amitrytiline(whatever sp? hehe) anymore, I remember it didn't do too much for me, I felt a little better but the pain level was the same. I still haven't found a pain med that does the trick yet......just gotta keep looking. Thank u both!
Take care
 
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