Diag 3 weeks ago - crippling fatigue is scaring me

traci0211 · 03-19-2008, 11:47 AM

I have been sick for over a year seeing many doctors in a range of specialties. I was advised over and over again, it's just your thyroid (diagnosed with Graves 3 years ago) and my Thyroid med would be changed for the 100th time. I was referred to a Neurologist who specialized in Fibromyalgia. The normal Neuro test he does on all patients, (hit my knee with hammer, blah blah blah) resulted in him advising me I was "a mess neurologically". He ordered MRI (Brain/Spine), Evoke Potentials, Nerve Study, blood work and the worst test every, the spinal tap. He never said - "I think it's MS" - he just said he felt there was something going on in my brain causing the symptoms I was having. I couldn't vaccum a room without having to lay down for 4-5 hours, every day after work I went straight to bed until the next morning. I forget what I am talking about mid-sentence and/or I know what I am trying to say but cannot find the words. I told him "I felt like something was really wrong and if we didn't figure it out, it may be too late to treat it. (PS: up to that point, I never even read or knew anything about MS).

Three weeks ago, my husband and I went to get my results and Doc said my spinal tap confirmed it - I have MS. I was relieved for about 30 mins becuase something was finally found and I wasn't crazy and then I went home and read about the disease. The panic, confusion, frustration and reality have set in.

I did the 5 day infusion therapy with steriods, I tried the meds for fatigue to no avail and promptly started my MS injections 8 days ago. I am still only awake 3-4 hours a day. I sometimes take a sip of water and fall asleep before I swallow and choke. My husband wakes me up to make sure I eat, take my medicine and walk around to get some exercise. He is a Dallas Fireman and my hero!

Why am I not getting any energy back??? I thought the Infusion therapy was supposed to end the relapses more quickly? I don't understand. My GOD am I going to be like this the rest of my life. My life revolves around my bedroom!

Please tell me someone out there has experienced this fatigue and that it DOES GET BETTER. I need to know somebody somewhere has seen this thru and that I will start regaining my life at some point!!!

Sorry for the desperation but I need to get back to my job and taking care of my husband and my son!!!!

Snoopy61 · 03-19-2008, 01:10 PM

Traci, have you had a sleep study? Those of us with MS seem to be prone to sleep disorders and a sleep study could rule in/out a sleep disorder.

traci0211 · 03-19-2008, 02:09 PM

Thank you so much for the quick reply. I have not had a study done. I will definitely look into this.

In you response you have never used "DMDs" - not sure what that means?

Do your exacerbations include this MS type fatigue?

Snoopy61 · 03-19-2008, 02:35 PM

Quote:

Originally Posted by traci0211

Thank you so much for the quick reply. I have not had a study done. I will definitely look into this.

In you response you have never used "DMDs" - not sure what that means?

Do your exacerbations include this MS type fatigue?

DMDs = Disease Modifying Drugs = Betaseron, Avonex, Rebif, Copaxone, Tysabri.

I can have pretty bad fatigue with an exacerbation but not to the extent your describing.

However, your description of your fatigue and the fact the meds are not helping makes me wonder about a sleep disorder.

The reason: I went about 2 years with the kind of fatigue you seem to be having. The fatigue became a quality of life issue (I had no life, all I did was sleep) when I finally mentioned it to my PCP. He immediately schedualed a sleep study - I have sleep apnea and use a CPAP machine.

I have since found the sleep apnea was causing cognitive problems and other problems I just blamed on the MS.

vonnag · 03-19-2008, 02:38 PM

Hi Traci,

I relate to the fatigue. I am in bed with my laptop right now. For seven weeks straight, it seemed all I did was sleep and go to doctors appointments.

I was diagnosed two weeks ago myself. When my neuro. gave me the news, I told her that it actually felt good to have a dx., because now I knew it wasn't "all in my head" ha! ha! (a little bit of irony there, it was in my head, 6 leisions that is). Anyway, I expressed how hard to deal with the fatigue had been. It is not a visual symptom, so people think you're just lazy. I told myself I was just lazy. Every since my first attack a year and a half ago, my energy level has been way down.

Well, the neuro gave Provigil for the fatigue. I took it around 4:00 p.m. that day and was up all night! I absolutely could not sleep. Needless to say, the med. definately kept me up. As I continued to take it though, I noticed I could not take a nap during the day, even if I tried. I continued to feel very tired, but just could not sleep. I didn't have the energy to anything, now I couldn't even sleep! It also caused my balance issues and tremors to get worse. I stopped taking it, and slowly, after five days, I am feeling much better. Although I don't have much energy at all, at least I am not in bed all day.

My kids know I am feeling better because I am actually complaining about the messy house!

Well, I think the combination of my body coming out of the attack, prayer, and a more healthy diet have all helped.

The Provigil didn't help me, but all meds. work differently for different people. It is interesting to note what my neuro. said when I told her that the Provigil helped me stay awake, but didn't necessarily give me more energy. She said a lot of people told her the same thing.

This is a very scary time because in between sleeping, it is easy to lay in bed and worry. At least when you are up it's a little easier to get your mind on other things.

As far as the infusion therapy helping with fatigue, I am not sure about this.

I took two rounds of oral steriods, and the fatigue was just as bad as ever. The steriods did help with the numbness I was having. The neuro. said when she gave me the prescription for the steriods that it would make me hyper. I thought that sounded great because I needed to clean my house! I was looking forward to having all this energy!! It didn't happen AT ALL. I totally slept the days away while on the steriods.

I don't mean to make this a thread about me and my story. I just thught it might help to hear from someone who understands. Yes, my fatigue is going away, and I am feeling better. You WILL feel better too. Be thankful that you have a wonderful husband who is supporting you through this. This can be even more helpful than medicine.

By the way, I think we live fairly near each other. I am in Fort Worth, TX.