Vasculitis UK

Feeling Off / Malaise / Fatigue

I was wondering if anyone else feels this way. On a day to day basis I get a feeling of uneasiness. It's difficult to describe but feels like constant fatigue mixed with a sensation of being about to pass out. I felt this way before treatment and continue to experience this sensation several months into treatment. It's especially bad when I'm out and about. I mentioned this "lightheadedness/brain fog" to my consultant but he's never seemed too concerned about it. I can just about deal with all the other symptoms but this one in particular is by far the most challenging. Whenever I try to explain how I feel it just seems like no understands how debilitating this can be. I try and get a good night's sleep but an hour or so after waking up it feels like I've done a day's exercise in a sauna.

27 Replies
oldestnewest

I had the same at the start of my GCA PMR a few years ago seemed to get better but for the last month have had this awful fatigue and odd feeling of lightheaded - my blood tests were ok .... trying to be positive and tell myself it will pass as it did before. Brain fog not as bad this time but living alone it can be quite worrying. I blame the weather! I do appreciate the times in between when I feel normal!

1 like
Reply

It can be so frustrating. Sometimes I think the weather has a part to play too. Take care :)

Reply

The weather has a lot to do with it. I have seen older people suffering more, no wonder people flock to Devon to retire, not hanging around In the colder areas.

Reply

I struggle to put the sensation into words but I experience something similar to what you've described. At home, I am able to rest but if I'm out & about running errands, I'm in a bit of a pickle. I've left stores mid-shopping, only to go to my car to rest, and then drive home. I've become familiar enough with the feeling that I stay home on days I sense trouble. Prior to my MPA diagnosis, I suffered with debilitating migraines and I equate the current sensation to the pre-migraine "aura" I frequently experienced. Instead of the onset of a migraine, I am overwhelmed with fatigue, brain fog, and then inevitably, pain . Doctors are not interested in diagnosing the phenomenon.

Be well, vasci friend.

1 like
Reply

Thanks michichgo. I'm often weary in public and keep thinking what if I pass out in the middle of the road or in the grocery store. Unfortunately, if it can't be seen it sometimes isn't taken seriously. Keep well :)

Reply

Hello Vo321,

I would get a medical bracelet with your name, diagnosis, most used medication, your doctor's phone number, phone number of someone close so if you do pass out when alone out and about, bystanders or first responders know what to do, or if you were taken to hospital, personnel know something about you and who to call.

I have vasculitis and experience what you have described. I found a website called "Lauren's Hope" that sells lovely medical jewelry and engrave the connecting charm to your specification. Prices reasonable.

I wear it always while out b/c I am in my husband is a US legal resident, but speaks French only, and we live in US, and if he is with me , he can bring attention to the bracelet, and also good if I am alone.

I believe you can get basic ones at a pharmacy, but there are several websites that sell more attractive bracelets, necklaces and even ankle bracelets. They have very masculine styles for men as well.

Mine has my name, vasculitis, on prednisone and methotrexate, allergy to NSAIDs. , doctor's phone number, my daughter's phone number. Never leave home without wearing it. I think it reassures me to have it.

Hope we all feel better soon.

Reply

Thank you so much. I had no idea there was such a thing as a medical bracelet. I will definitely look into it. I think it would give me a lot of reassurance when out and about. Thanks again and wishing you the best.

Reply

My pleasure.😊

1 like
Reply

I think, you are right. Quality of life is not part of their job. Saving organs, body parts, but not saving your ability to lead a fulfilling, normal life.

Reply

I've been seeing my current rheumi for nearly a year - he coordinates with my nephrologist, who is my primary MPA physician (saving kidneys: priority numero uno). My rheumi seems to genuinely understand the unseen devastation this disease can cause and he's working with me to better my quality of life. The bar is set pretty low, in all honesty, but if some improvement is what is offered, I'll take it! For sure, for sure!!!

1 like
Reply

Nice to hear it :)

1 like
Reply

hi I feel the same also anxiouse constant pain in legs and base of feet the fatigue and blurred vision high blood pressure and doariah it is relentless just want all to stop I am on retuximab I wonder is it side effects :(

Reply

I can imagine, it must be frustrating. Hang in there :)

Reply

I do get to read some peeps developed Lupus from it.

Reply

Hello Vo321, I also have the same feelings. Some days I can excercise on my spinning bike for 20 mins (that’s my max so far) on other days I feel very tired and don’t have the energy or the inclination to go on it at all. This is frustrating as I have put on a stone and am struggling to lose it ( good old prednisolone)! I feel anxious sometimes but try to keep busy and not think to much about this horrible illness. I was diagnosed in June 2017 and began treatment immediately following a kidney biopsy. I have been told 3 months ago that there is no sign of any activity and no ANCA in blood tests so all good. All I do is make the most of the good days and not worry about the not so good ones. Just do the best you can and take each day as it comes. 🙂 take care.

Reply

Hi you were diagnosed the same time as my husband he has GPA which was in lungs and sinuses. He also is is drug induced remission. 20 mind on your bike is good my husband can manage 10 mins but we are able to walk quite good distances now. Like you he gets very fatigued and it catches us out. He is also very positive and we enjoy the good days. He has been out on his motor bike today but guess he will pay for it tomorrow 😩

Reply

Fingers crossed he doesn’t suffer tomorrow ! 🙂

1 like
Reply

Hi Webbyj, well done on being able to do some exercise (20 minutes is better than nothing). I've steadily put on a little weight since starting treatment. Pacing is definitely necessary. I'm glad your blood work came back good. Thanks for the advice :)

1 like
Reply

What medication are you on? Could be side effects? I tend to find that any cytotoxic drugs could one of the major culprits.

Your Dr may not be quite aware what you are trying to say? Is it a Rheumatologist, who didn't "get it"? I have seen a few posts lately that conventional Drs fail to see you/patients as a whole, but look at your body parts/bloods, that need their attention. I had never thought like that at all. But how true, that is, when voiced by a few different patients ( with a few exceptions).

Reply

I was initially on MMF for a month or so but my consultant changed it to Rituximab after an MRI showed CNS involvement. I doubt it's the medicine causing this symptom, as I still felt it before diagnosis. My consultant is a nephrologist.

Reply

The problem is the rheumatologist , who may get it, but is never there and leaves all to a PA. She looks absolutely exhausted herself, leaving me to wonder if she is thinking straight.

Making some new appointments tomorrow.

Reply

Good luck, please keep us updated. :)

1 like
Reply

That's nice. Some patients are luckier than others, in terms of drug reactions/side effects.

Thank you for your pleasant response.

1 like
Reply

The feeling of exhaustion, would seem to be normal, I have had MPA for 11 years now, I'm afraid that it is something , you have to learn to live with.

My rheumatologist told me all those years ago , that a significant no. of people with vasculitis have this problem.

There are a number of avenues being followed to find out the cause of this problem, I wish they would hurry up.

Best of luck

Tony

Reply

I'm a five year MPA-er & the fatigue is debilitating. Once it settles in, the pain is soon to follow & whoa baby it'll put me down fast!

Reply

Thank you

Reply

Normal...I wish it wasn't. One consultant, said, otherwise. I feel vastly cheated on. I also think when is the onset of the disease and how speedily you were treated, what damages sustained, how widespread the damage and where/which organ, your age group, other co-morbid conditions, medication side effects, etc. Transition from long, miserable winter into spring in this damp weather doesn't help, massively.

Reply

You may also like...