fatigue---how would you classify yours?

[Guest Julia59]

Ok Folks this fatigue thing is getting a bit out of hand for me-----------

I guess i've been spoiled with the on and off kind of fatigue-----but now it's mostly "ON"------not sure why----I have a few guesses.

Anyway, I wondered what your fatigue is like. Mine is like a fluish sick all over feeling with a lot of muscle weakness. I have also noticed some muscle wasting in my legs again---but not nearly as bad as it was four years ago. It does seem to be progressing. In fact the fatigue has been so bad lately that everytime I try to accomplish a grocery trip with help from my husband---I can't even make it with his help and him pushing the cart. Basically I just go to the store and walk beside him to help with the grocery list. By the end of the trip i'm so wiped out that I can't think straight, and I feel on the verge of collapse.

The pain in my upper spine is so bad lately that it feels like my chest is caving in----and it's getting more and more difficult to breathe. It actually feels like I have an infection in my spine/neck area----but I know I don't---it just feels that way.

Last night my husband and I had my Aunt and Uncle from California over for dinner along with my parents, my Son and his girlfriend & her daughter Kaela.

Everyone was so nice and helped a lot. I had to do virtually no cleaning as my husband did all that, and my son ran the sweeper, and the only thing I had to do was cook. I had to peel the potatos while sitting on the kitchen floor. It's not because of orthostatic intolerance ---I think----it's more from an intense weakness----that I don't really understand.

No one else could help with the cooking, because no one knows how to make my home made gravy from the boneless pork chops I made. And I never measure things, so the mashed potatos were all mine to make also. The salad I made early so I could rest between chopping vegetables. My son's girlfriend served the salad, and my husband served the food and cleaned up. When I sat down to eat I was so tired and weak I could only pcik at my food.

This is just insane. Dr. Grubb's nurse practioner increased the wellbutrin, but I know it won't help, and the last time we tried it it was too much anyway. I know this might sound weird, but when I get this bad I notice I can't even pass gas. I bloat up like you wouldn't believe----and my bowels just don't work.

I've never had a complete physical---or autonomic workup other then the Tilt table test, stress echo, a neurological exam and now the loop recorder. My white count is always on the border, and my autoimmune results were way off the charts, and the endocrinologist said this was normal because I have autoimmune hashemotos thyroid. I wish I could remember the name of the test---but it was in the thousands-----and is was supposed to be in the hundreds. I tried to look for it, but I gave the only copy to my PCP, so i'll have to request another copy. I went to the Toledo Clinic and had the blood work there for my endocrinologist.

Anyway----enough of my ramblings. I just wondered if you thought my fatigue sounded like typical POTS or if something else is going on---like my spinal/brain stem compression issues or another problem altogether. Of course this will be addressed when I see Dr. Grubb in October. I'll also bring all this up at me appointment at the Cleveland Clinic on Sept. 9th. How they got me in so early---is a mystery to me....................

I'm not my best with the way i'm wording things tonight---so please understand--------i'm just wiped out way more then usual----I just can't believe it.

Julie :0)

[michiganjan]

Julie,

I get fatigue a lot. When I get it, it is like my brain is so tired that I can't think anymore. I just want to sleep and when it is really bad, my brain can actually put me to sleep. At that point I feel so tired that I could cry, just like a little child in dire need of a nap. I think that sometimes I get that way becauase of overstimulation. Whenever I have family here for a weekend, I am that way after they leave, or even sometimes before they leave.

Sometimes I think it is brought on my exercise, what they call post-exertional malaise, although I sure don't have to do much to cause it. Just my daily bike ride (only 15 minutes) is enough to make me tired later in the day.

You certainly don't need any new stuff to deal with. You have enough already! However, you are on the right track. The recorder will tell you what you need to know about your heart, and the appointment at the clinic will help, also.

I don't do well in the grocery either. Sometimes I go with Jeff and walk along with him like you do. Then I go sit down on the bench by the door while he goes through the line.

As for your blood test, I sometimes have a positive ANA test, which indicates some kind of autoimune something, but then there is never anything specific that shows up. I have had rheumatoid arthritis type symptoms at times, but my RH factor has always been okay.

Hang in there!

Michigan Jan

[Lukkychrm42]

Hey,

My fatigue is kind of a constant lethargic feeling. It never goes away, and I don't remember the last time I actually had any energy. I have very low blood volume, and it's not improving yet, so that's probably part of it. I sleep all I can, pretty much, while still doing well in classes, so I have no social life and pay no attention to hobbies I used to love.

Lately I've been walking around more (have had to- as am in England now without car or bike), and I have to rest every few minutes, and if I'm carrying something like groceries or a bookbag, I'm about to break down and cry!

I've had the autonomic workup done, but never seen a neurologist or anything to do with autoimmune anything..

All I know is that I really hope he switches me to the DDAVP (felt good with this med trial, but heart rate not kept as low as the other meds) soon, because I think the beta-blocker contributes to the fatigue.

Sorry I'm not much help.

[momofpreciousboy]

Ok, I won't comment on the fatigue problem-as I have the opposite problem right now.

I just wanted to say-my you can do a lot. . I have a lot of chest pressure-feeling like it is constricted-like I have a tight vest on and cannot take a deep breath or even just breathe a lot of times. I also get the severe inward pulling of the head neck and shoulder area. The way the dr explained it to me was that it is the adrelin (sp) that your body releases (something that the ANS does) causes your muscles to tense up. I have so many problems with this. Is yours where the top of the shoulders and neck meet up by the spine--the worst? Not sure how to make this stop--duh why didn't I think to ask? I had ask my husband to tell me again just so I could write this. Jennifer TX

[Ernie]

Hi Julia,

My fatigue feels like all my cells are exploding and that my body is decomposing. I lie down for days and it does not go away.

Now with the CPAP I am doing much better. It's more muscle pain and being tired at the end of the day.

Ernie

[Guest Julia59]

Ernie,

They found that I have some type of problem in my sleep, that is why that want me to finsih the sleep study.

They had already found something wrong in my "light sleep", but they were not able to record anything in "rem" sleep. The pulminologist want's to do two nights to see what the c-pap maching does for me.

Julie :0)

[corina]

Julie,

I wish the CPAP could do as much for you as it does for Ernie. Keeping my fingers crossed for you on the sleep study!!!

Corina

[DancingLight]

Julie,

I don't know...fatigue is one of my OVERWHELMING symptoms all of the time. I honestly rarely have 'moments' of clarity from in --in both body and mind. So, I cherish the moments when I have them. My body just feels so heavy and my clarity and inablity to concentrate are horrible. I am completely homebound. The other day we went for a 20-minute drive. I was so proud of myself for going, but when we got home (even though I was reclining) I was white as a sheet and completely exhausted. I don't know why or what causes it all for me...CFS? The stenosis? All I can say is that I definitley empathize with the feeling of total exhaustion you are feeling...and I am sorry you are dealing with them on top of everything else.

Emily

[Poohbear]

Hi Julie!

Fatigue is one of my worse problems. I just have no energy sometimes and I can do a task (like take a shower) and I can't help but fall asleep. Some days I keep trying to wake up and every time I lay down I fall asleep. Other days I just dont have much stamina and feel tired and lifeless much of the time.

I also get frustrated with myself because when I'm tired and fatigued I get INCREDIBLY grumpy and I feel like I take it out on people sometimes.

[Guest Julia59]

Emily,

When I was in Ny Dr. Bolognese said my sympathetic nervous system was very irritated from long standing compression on my spinal cord. From what I understand the sympathetic/parasympathetic nervous system originates in the cervical spine/thoracic, lumbar area, and lower brain area. That part of the ANS originates in that part of the anatomy and then branches out into other parts of the NS---(enteric). This is pretty basic, and of course more complicated, but if there is compression on the cervical spinal cord or lower brain there will be some form of ANS dysfunction.

The sympathetic nervous system controls the flight of fight responce---and if it over works, your parasympathetic can't work well. This results in lack of sleep, digestion problems ect. With an over stimulated SNS you will also feel over stimulated a lot of the time, so even the most simple activities, i.e.-->car ride can make you feel wiped out. Nothing worse then feeling over stimulated and wiped out at the same time.

After Dr. Grubb installed the cardiac loop recorder I was so overstimulated from the lidocaine I thought I would jump out of my skin, but at the same time I was wiped out and tired---way to tired to feel that way--- And to add insult to injury, I was in so much pain from having the muscles inside my chest ripped around to place the recorder so it would be a tight fit to get an accurate reading, and to make sure it would not move out of place.

I have not been the same since----but really I was not doing very well before the loop recorder was placed---I almost backed out.

I wonder if you could bring up this to your doctor and see if he might relate some of your fatigue, and lack of sleep issues to your cervical spine problems.

Just a thought.........you may have already addressed it----------

Julie :0)

[DancingLight]

Thank you very much Julia for explaining that all so well. I feel like I read this stuff over and over again and I still get it mixed up! What happened to my brain? I miss it!

You described your loop recorder incident so well...that's me to a T! ugh! I feel for you girl! I am so tired but overstimulated. I'm in pain and can't get comfortable. The pull on my neck creates the overstimulation so that makes it hard for my ANS to settle down. It's so much fun.

I'm gonna try for sleep now...thanks for your help. Sorry you are feeling so darn crummy. Grrrrrrr!

Later Alligator!

Emily

[MightyMouse]

I usually feel like I have the flu--and this time of year, add my allergy load to my body's issues, and it's tougher to get out of the house each day...well, I should say, it's tougher just to move, get out of bed, and eventually make it out of the house. I always rejoice at the first frost because it means my ragweed issues will slow down lots.

I can't say enough about how much treating all my composites of issues has helped me--and Julia, if you've not had a thorough work up, it's possible youv'e got other things torquing your system up and exhausting you. Treating my allergies has made the Autumn more liveable for me--meds helped, but the best $$ Teri and I have ever spent was to rip out our carpets in the bedroom. I have not had a single asthma attack in that room since we tossed the carpets in the trash last Spring. That is AMAZING. I've even been able to lower my needed dose of Advair to once a day during this season, and I was off of Advair entirely for a few weeks before the the ragweed was getting ready to bloom.

Every untreated /unattenuated issue with your body will add to the load your handling on a daily basis. ANS dysfunction + bone issues + random illnesses of any kind make it hard for your body NOT to feel tired even after a good sleep. I also can't tell you how grateful I am to have a doctor who sees my big picture (my gp) rather than a bunch of unrelated symptoms (my former gp's --a long string of them since my guardian angle physician's assistant moved away a few years ago).

It's about time to get yourself checked out.

Nina

[Dawg Tired]

Fatigue... It is like I can't lie flat enough on the mattress to rest. Maybe if I could just melt into the mattress or become one with it. Like even lying in bed is taking up energy.

I have a tall stool with a back on it so I can sit at the stove/sink to cook - on the rare occasions when I can. I also have a kitchen island that is on wheels so I can easily move it wherever I need it and that is a big help.

[Aprilmarie52]

mine is definatly fluish, but I dont have body aches. I just get very tired and I feel feverish even though I am not. I also get nausea when I am really run down.

[Guest Julia59]

Nina,

I'm not sure what to do at this point---but i'm going to try and give it a good shot to try and figure it out.

The problem is that I have never really been taken seriously by many of my past physicians, and also still have trouble with the current ones except for Dr. Grubb and Dr. Heffez/Dr. Bolognese. I'm not sure about my new PCP. The nurse in her office does not seem to have a clue. I'm concerned they will think i'm being "non compliant" because I have such difficulty tolerating meds they want to try. The cholesterol drugs---the Zocor gave me terrible side affects, and I was told by Dr. Grubb's office that the Naspan is a vasodilator and it will worsen my POTS symptoms.

It just seems common sense that the niaspan would have a nasty affect---so maybe this Doc (PCP) is clueless also. She did say she was familiar with dysautonomia. I'm thinking this is just another doc who does not take me seriously. My old PCP was great, but she started working at the ER at another hospital----no more private practice. I ran into her in the Grocery store, and she even offered to help with my SSDI----but I politely declined. Oh---if I could just take that back now------- .

It's hard to articulate my words at my appointments with most of my doctors. I even have trouble at my appointments with Dr. Grubb---and I know he takes all of this stuff seriously. Even when I had the minor surgery to place the loop recorder I never gave the details to anyone at the hospital how bad I felt after the procedure, and the effects the lidocaine was having on me.

I stayed at the hospital for several hours after the procedure until the tremors, nausia and tachycardia went away. I felt so self conscience about the whole thing because I thought if I told anyone they would just not take it serious. I told my Dad, Husband and mother in law that I was having a rough time, but never gave the details. I only gave details to this forum later---as I know you all understand.

When I finally went home I still struggled with bad tremors and tachycardia, but finally fell asleep for a couple of hours---then woke up with the same thing, but it finally started to subside.

When I have a really bad day i'll stay at home, or close to home because I don't want to be seen. When my husband tries to comfort me, i'll push him away---because I don't even like him to see me that way. I just hide.

At this point i'm quite discouraged, and I tend to drag my feet a bit. I'm not even sure the Cleveland Clinic will take me seriously. It's almost like the Docs who do take me seriously are thought to be crazy themselves-----due to the fact that they take me seriously. They must be out to make money-----there must be some other reason, as it couldn't possibly mean that something is actually wrong with me---and that I would actually need treatment.

One case like this in particular was that neurologist I tried to get to work with Dr. Bolognese and Dr. Heffez. He said all my tests results were wrong---and all the other docs were wrong in their diagnosis----and then proceded to tell me everything was psychologically manifested in my mind----even the pain wasn't real. Although I knew this guy was off his rocker himself---it was still very discouraging---not to mention he threw a BIG MONKEY WRENCH into my SSDI case.

It's a tough time right now--I get angry and get over it---then I get angry and get over it.

This is why I talk with Beth---my psychologist. She still tries to get me focused on trying to find the right group of Docs to both take me seriously, and also give me the right medical care.

So for me-----------it's a struggle to just get a PCP who will take me serious enough to get the proper workup.

Julie :0)