Some Things I Wish People Knew About MS-Related Fatigue

 

Devin Garlit

 

Of the many symptoms that plague those of us with multiple sclerosis, one of the most common is fatigue. It’s such a common symptom that the National Multiple Sclerosis Society estimates that fatigue affects at least 75% of those with MS.

Sadly, fatigue is a symptom that can be hard to comprehend if you haven’t actually experienced it. While the topic of fatigue has been covered a lot, I wanted to write something that could be shared with those who don’t have MS, those who may not understand fatigue. Basically, some things that I wish everyone knew about fatigue. So here we go!

MS fatigue is not just being tired

MS-related fatigue is NOT the same as being tired. You are tired when you’ve expended a lot of energy or had a long day. Our fatigue is not caused by losing out on some sleep or overworking ourselves (though doing either of those can certainly make it worse); it is present no matter what.

Fatigue makes simple tasks feel impossible

For me, when fatigue sets in, it feels like my entire body is weighed down. Like I’m submerged in an invisible layer of quicksand that makes every move extremely arduous. The simplest of tasks becomes incredibly difficult. I could be lying on the couch and just trying to reach for the remote control can seem like a near-impossible task. That’s something that I don’t think people understand. It’s not just that I’m too exhausted to go do something, I’m too exhausted to do anything. Simple tasks like taking a drink of water or going to the bathroom become astonishingly difficult for me.

Expending all our energy

A common meme on the internet proclaims that people with multiple sclerosis expend 5 times as much energy as a normal person. While I haven’t seen a reference to any science behind that, it’s still a great way of explaining what fatigue feels like to us. It takes so much for us to do something that others might take for granted. If you have or know someone with MS, then you’ve no doubt heard about the Spoon Theory, another great description of what it’s like to live with MS that speaks specifically about fatigue.

No amount of sleep or rest helps

No amount of sleep or rest will help my fatigue. Maybe all I can do is sleep or rest, but that doesn’t mean that more of that will fix the problem. Remember, MS-related fatigue isn’t caused by something I’ve done, it’s caused by damage to my nerves and brain.

Fatigue is something I encounter at some point every day of my life. Sometimes that means I will wake up fatigued, making it hard to get out of bed and start my day. Many times it will hit me in the afternoon. It can last all day or for a few hours.

Fatigue is unpredictable

It can come on suddenly, which means I may have to cancel plans on short notice. Physically, in addition to feeling weighed down, my body becomes weak and tingly. That weakness leads to falls and also dropping things. While fatigue can happen to me almost randomly, some things are guaranteed to bring it on, like a change in temperature or stress. Fatigue is not just a physical issue, it makes my cognitive problems worse too. The fogginess, the confusion, the memory lapses that I experience because of MS all increase if I am dealing with fatigue.

An invisible symptom

Fatigue is one of those invisible symptoms we deal with, which means many of us have to deal with people, including friends and family, believing that it’s not a real issue. This leads to other problems like depression and loneliness. When we do mention it, we unfortunately often have to hear others say something along the lines of, “Oh, yeah, I’m tired, too, I understand”. I’m sorry, but you don’t. You have a choice in being tired; we don’t. There is perhaps no more infuriating of a situation than this one: when you discuss your fatigue and someone else says they are tired. Again, it’s not the same thing. I’ve been tired before I had MS and trust me, it’s different. The exhaustion I felt after running a marathon could not even compare to what MS-related fatigue feels like.

Difficulty making it through a workday

MS-related fatigue is a big reason why many people suffering from it end up leaving their job or why their performance begins to suffer. According to the National MS Society, fatigue is a big culprit when it comes to people with MS having to leave work.¹

It's absolutely demoralizing

An example of an all-too-common fatigue scenario for me is waking up with some big plans (for me, let’s say that means trying to clean the kitchen, maybe even just emptying and loading the dishwasher) and then being completely unable to do it. To have zero energy to be able to do anything and have to just lay there. It’s absolutely demoralizing to me and it happens at the very least once a week, often more. Having fatigue feels like having your life stolen from you, but you are still awake to see it go by without being able to partake in it. MS-related fatigue makes me a prisoner in my own body.

 

Advances in MS Treatment

  New treatments for MS are coming online all the time. Some are approved by the FDA, while others are still in clinical trials. See how they may help treat your symptoms.

 

Drugs May Help Rebuild Myelin

Two drugs, metformin (Fortamet, Glucophage, Glumetza, Riomet) and clemastine (Dayhist, Tavist), may help rebuild your myelin. Usually, metformin treats diabetes and clemastine helps with hay fever. Researchers found metformin can help myelin-making cells repair it better. Experts found clemastine helped with the speed of messages from your eye to your brain. Animal studies showed metformin can improve the effect of clemastine.

More research is needed about the effects on humans.

Pioglitazone May Prevent Myelin Damage

Experts are doing clinical trials with pioglitazone (Actos), a diabetes medication, in people with progressive MS. They want to see whether the drug can target immune system attacks on myelin. Pioglitazone may be a useful therapy to protect nerve fibers from more damage and even repair damage to myelin.

BTK Blockers May Lessen Nerve Damage

Bruton’s tyrosine kinase (BTK) plays a role in the survival of B cells, white blood cells that make antibodies. Some B cells are linked to MS relapses and progression because they attack myelin. BTK inhibitors (BTKis) target B cells that can do damage while leaving useful B cells alone. BTKis were first used to treat cancer. Now scientists are studying some BTKis – evobrutinib, fenebrutinib, orelabrutinib, and tolebrutinib – in clinical trials to find out how effective they are against MS.

ATA188 Targets EBV, May Help MS 

This therapy targets Epstein-Barr virus (EBV), which is believed to play a role in how likely you are to get MS. ATA188 involves T cells (white blood cells in the immune system) that target and kill cells infected with EBV. Experts are studying the proper dosages, safety, and success of this intravenous (IV) infusion and how it can help treat progressive MS. 

Stem Cell Therapy for Harmful Cells

This treatment uses or targets stem cells, which are cells that can turn into different types of specific cells all over your body. They can help your body repair itself. One form of stem cell therapy is hematopoietic stem cell transplantation (aHSCT). Experts use this to reset your immune system through chemotherapy. If you have MS, this will get rid of harmful cells that cause damage and swap them with healthy immune cells. 

DMTs That Can Change the Course of MS

Disease-modifying therapies (DMTs) can help control your MS symptoms. The FDA has approved different types of medication to treat and manage MS:

• Ocrelizumab (Ocrevus), ofatumumab (Kesimpta), and ublituximab-xiiy (Briumvi) target CD20, a protein on the surface of B cells. These B cells are white blood cells that have been shown to play a role in MS.
• Diroximel fumarate (Vumerity) lessens inflammation and stops nerve damage that may cause MS symptoms.
• Fingolimod (Gilenya) reduces the MS relapse rate in adults and children. It’s the first FDA-approved MS drug for kids.

Other DMTs That Can Change the Course of MS

• Ozanimod (Zeposia) can help with clinically isolated syndrome, relapsing-remitting MS, and active secondary progressive MS.
• Ponesimod (Ponvory) can lower the chance of MS symptoms coming back by more than 30%.
• Cladribine (Mavenclad) and siponimod (Mayzent) are other treatments that can lower your relapse rate if you have MS. They stop certain cells of the immune system from causing nerve damage.

Cladribine for Other Forms of MS

As mentioned, this drug already helps people with relapsing-remitting MS. The first trial of its kind is studying whether cladribine can help more advanced progressive MS. Experts are hopeful because it’s one of the few DMTs that can get inside your brain and spinal cord. That's why it’s so helpful for relapsing MS.

Cholesterol Drugs May Help With MS

Simvastatin (Flolipid, Zocor) is a statin doctors prescribe to treat high cholesterol. It may also help slow down secondary progressive MS. Some studies show that higher cholesterol levels are linked to worsened MS. Because of this, experts thought simvastatin might slow down MS progression if it lowers your cholesterol. But a more recent study found that the drug directly slows down the progression of MS, even if it doesn’t help your cholesterol levels.

 

From: WebMD

Surgeries and Procedures for Multiple Sclerosis

 

Medically Reviewed by C. Nicole Swiner, MD on March 02, 2023

Written by Shawna Seed

Because there’s no cure for multiple sclerosis (MS), your doctor will try to manage your symptoms and slow the disease’s advance. To start, you may take a combination of drugs and go to physical therapy.

If medication doesn’t work or has side effects you can’t tolerate, your doctor might suggest surgery or another procedure. You might hear some of these operations referred to as functional neurosurgery. This is a broad term for procedures that alter the way parts of your nervous system function.

Baclofen Pump

Up to 80% of people with MS have spasticity. That's when signals between your brain and your muscles get scrambled, making your muscles stiffen up. Spasticity can make it hard to walk, speak, and swallow. You could also have spasms that are painful or disturb your sleep. Eventually, it may limit your range of motion.

One drug that treats spasticity is a muscle relaxant called baclofen. If oral drugs don't work for you, you might get an intrathecal baclofen pump. (This approach is also called ITB or intrathecal baclofen therapy.) Your doctor implants a pump under the skin of your belly. It's attached to a thin, flexible tube that carries the medication straight into the fluid of you

To check whether the treatment is right for you, your doctor will do a test first. They'll insert a needle into your spine (called a lumbar puncture or spinal tap) and inject baclofen into your spinal fluid. After several hours, your doctor will know whether the medicine works.

You’ll need surgery under anesthesia to place the pump. That always poses some risk. Other possible complications include:

• Infection at the site of surgery
• A malfunctioning pump, which could lead to withdrawal symptoms when you suddenly stop getting the drug
• An accidental overdose of baclofen

Advantages of ITB include:

• Baclofen is more effective when it goes straight to your spinal fluid.
• Your body gets a steady dose.
• There are fewer side effects than when you take the medicine by mouth.
• Your doctor can adjust the flow of medicine to change throughout the day.

Deep Brain Stimulation

Tremors, in which your head, limbs, or body tremble or shake uncontrollably, affect up to 60% of people with MS. They can make it hard to eat or dress yourself. In severe cases, you might have trouble swallowing or speaking. Some people find tremors hard to handle emotionally.

This is a hard symptom to treat. Your doctor might have you try several different medications. If your case is serious or drugs don’t help, you might be able to get a procedure called deep brain stimulation (DBS).

In deep brain stimulation, a neurosurgeon puts electrodes in your brain. They implant a programmable device, a kind of controller, under the skin of your chest. A wire under the skin of your head and neck connects the controller to the electrodes. DBS sends electrical impulses that disrupt the brain activity that causes tremors.

DBS isn’t as effective for MS as for some other conditions. But it may still improve your symptoms. The risks include:

• A chance of brain hemorrhage or stroke
• Infection
• Problems with the device
• Headaches

While your brain is being stimulated, you might have:

• Loss of balance
• Tingling in your face or limbs
• Speech or vision problems

Rhizotomy

Some people with MS, less than 5%, have intense facial pain called trigeminal neuralgia, or TN. It’s often described as feeling like an electric shock. Simple acts such as touching your face, brushing your teeth, talking, or chewing might set it off. It can also happen for no reason.

If medication doesn’t relieve your TN, rhizotomy might help. In this procedure, your doctor destroys fibers in the trigeminal nerve in your head so it can no longer carry pain signals. Rhizotomy is an outpatient procedure. You’ll go home after a few hours in recovery.

Among the types of rhizotomy are:

• Glycerin/glycerol, in which the doctor injects a chemical that destroys the nerve
• Radiofrequency, which uses a special needle and electric current to burn the nerve fibers

Your pain might return when the nerve grows back, usually in 1-6 years. But you can get rhizotomy again. Facial numbness is a possible side effect. It's more likely if you get the radiofrequency version.

Other Procedures

Neurosurgeons can do other procedures that may improve tremors or trigeminal neuralgia.

Radiosurgery, despite its name, is not surgery. The procedure uses focused radiation to target parts of the brain or nerves.

For trigeminal neuralgia, it uses radiation to damage the nerve fibers. It’s an outpatient procedure, and you won’t need anesthesia. It can take anywhere from 4 weeks to 8 months to feel the full effects. It’s the least invasive procedure you can have for TN.

To treat tremors, a neurosurgeon will send radiation to an area deep in your brain called the thalamus, which handles sensory messages.

Radiosurgery is also called the Gamma Knife, CyberKnife, or X-Knife.

Gastrostomy

Dysphagia, or trouble swallowing, is more common among people with advanced MS. But it can happen to anyone with the condition. If the nerves that control your mouth and throat are damaged or weakened, you might find it hard to drink or eat.

The condition can be serious for two reasons. First, you might not be getting the liquids and nutrients you need. Second, you run the risk of choking, which can send food particles into your lungs. That can lead to infection. Your doctor might recommend a procedure called percutaneous endoscopic gastrostomy, or PEG.

For PEG, a surgeon inserts a flexible feeding tube into your stomach through an opening in the skin of your upper abdomen. It’s often an outpatient procedure. Your doctor will numb the area and give you IV drugs to relax you. Once the tube is in place, you can get nutrients and liquids through it.

Possible complications include:

• Leaking of stomach contents
• Pain
• Tube movement or clogs

https://www.webmd.com/multiple-sclerosis/ms-surgeries?ecd=wnl_mls_060724&ctr=w

 

MS Trial Alert: Investigators Recruiting People with Relapsing-Remitting Multiple Sclerosis for Study Adding a Potential Myelin Repair Therapy to Disease-Modifying Therapy

 Summary: Researchers at 25 sites across the United States are recruiting 168 people with relapsing-remitting multiple sclerosis for a study determining the safety and potential effectiveness of adding to disease-modifying therapy the experimental, oral therapy that may promote the repair of nerve-insulating myelin (PIPE-307). The study is sponsored by Contineum Therapeutics.Details:Background: PIPE-307 is a molecule that inhibits the muscarinic type 1 (M1) receptor. The M1 receptor is a molecule in the brain that is known to prevent the development of cells that make myelin, the insulation of nerve fibers that is damaged in MS, and the formation of myelin itself. This study will test whether adding PIPE-307 to approved disease-modifying therapies is safe and potentially effective.Eligibility: Participants should be 18 to 50 years old with a diagnosis of relapsing-remitting MS. They should have been on any MS disease-modifying therapy for six months.Participants will be randomly assigned to receive one of two doses of PIPE-307 or inactive placebo, once daily by mouth, for 26 weeks. Subjects may remain on their existing disease modifying therapy. The primary outcomes being measured are the number of people with adverse events and vision acuity (an indication of the health of the optic nerve and vision pathways in the brain). Secondary outcomes include measures of disability progression and disease activity on MRI scans.The study will include routine blood draws, neurological assessments, MRI scans, and a remote sensor worn on the ankles to assess walking (for those subjects who agree to wear the device for short intervals during the study). People will undergo a series of screening assessments to determine eligibility, and then return to the site for follow-up testing at multiple times during the treatment period.Contact: To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please contact the site nearest you:
 
ARIZONAMegan HamiltonXenoscience, Inc.2601 N 3rd Street Suite 125Phoenix, AZ 85004602 274 9500SFLITMAN@XENOSCIENCE.COMMadison Turner, Ashely MitchellArizona Neuroscience Research, LLC3805 E Bell Rd. Suite 2400, Phoenix, AZ 85032480-210-8723madison@centerforneurologyandspine.com
ashely@centerforneurologyandspine.comCALIFORNIACasey Holden, RNREDI (Sutter Health)2850 Telegraph Avenue, Suite 110, Berkeley, CA 94705510-204-1610casey.holden@sutterhealth.orgCOLORADODevon GlazeColorado Springs Neurological Associates2312 N. Nevada Ave Suite 300Colorado Springs, CO 80907719-389-1126dglaze@csneuro.comFLORIDAKelly CalistriAqualane Clinical Research3200 Bailey Lane, Suite 180, Naples, FL 34105239-529-6780kelly@aqualaneresearch.comJodi MummertMS & Neuromuscular Center of Excellence3190 N McMullen Booth Road Suite 200, Clearwater, FL 33761(813) 431-4913jodi@gulfcoastcta.comClellia BergaminoVero Beach Neurology and Research Institute1040 37th Place Suite #201 Vero Beach FL 32960772-4492-7051 or 772-299-4304cbergamino@geodysseyrsch.comNicole DavisARS Brain and Spine1211 Dunlawton Ave. Port Orange, Fl. 32168386.204.0960 ext 632Nicole.davis@accelclinical.comGEORGIACarlyn R. Kappy, RD, LD, CCRPShepherd Center2020 Peachtree Road, NWAtlanta, GA 30309404-367-1375carlyn.kappy@shepherd.orgAndrea LevinVelocity Clinical Research6602 Waters Ave., Bldg C Savannah GA 31406912-790-4837alevin@velocityclinical.comINDIANASarah CollinsIndiana University School of Medicine Department of Neurology355 W. 16th Street, Suite 4700Indianapolis, IN 46202317-963-7315SQCollin@IU.eduKANSASLisa Schmidt, LPNUniversity of Kansas Medical Center3901 Rainbow Blvd, MS 2012, Kansas City, KS 66160913-588-3968lschmidt@kumc.eduMASSACHUSETTSJillian PellegriniNeurology Center of New England P.C.9 Payson Road, Suite 100, Foxboro, MA, 02035781-551-5812 opt 6jpellegrini@myneurodr.comMISSOURIAmber T. Smith, BS, MAWashington University School of MedicineDepartment of Neurology - John L. Trotter MS Center660 South Euclid Ave Campus Box 8111St. Louis MO, 63110314-362-3493 (p)ambertsmith@wustl.eduNEW MEXICOEmily Reese and Andrea RodriguezMS Specialty Clinic at the University of New Mexico's Health Sciences CenterNeurology Department MS Specialty Clinic
915 Camino de Salud NE, Albuquerque, NM 87131(505) 272-0959EjReese@salud.unm.eduandreRodriguez@salud.unm.eduNEW YORKAllison EmborskyDent Neurologic Institute3980 Sheridan Dr Amherst NY 14226716-558-3543
aemborsky@dentinstitute.comOKLAHOMAMicki DrakeOMRF Multiple Sclerosis Center of Excellence820 NE 15th St., Oklahoma City, OK 73104405.271.6242Micki-Drake@omrf.orgTENNESSEEKim PuccioSibyl Wray, MD Neurology, PC dba Hope Neurology2060 Lakeside Centre Way Knoxville, TN 37922865-299-5564kpuccio@hopeneuro.comTEXASZenaida HernandezBhupesh Dihenia MD PA3815 23rd Street, Lubbock, TX 79410 USA806-368-9415researchbhd@gmail.comElizabeth MartinezUniversity of Texas Health Science Center at Houston6410 Fannin, Ste 1014Houston, TX 77030(713) 704-4137elizabeth.martinez@uth.tmc.eduFahim DayaniClinical Trial Network713-484-6947fdayani@ctntexas.comWASHINGTONElisa McGeeUniversity of WashingtonMcMurray Building NWH campus, 1536 N 115th Street, Seattle, WA 98133206-598-9260emcgee@uw.eduAmelia JohnsonVirginia Mason Medical Center1100 9th Avenue Seattle, WA 98101(206) 287-6260amelia.johnson900@vmfh.orgTonya StiggerMultiCare Institute for Research & Innovation (MIRI)915 6th Ave. Suite #101, Tacoma, WA 98405253-403-1208Tonya.Stigger@multicare.orgDownload a brochure that discusses issues to think about when considering enrolling in an MS clinical trial (PDF)
 
Without participants in research studies, MS research would come to a standstill. Read more here.