fatigue overwhelming

[astley123]

84 years old pmr and gca for six years most of time suffering from severe fatigue have to go to bed every afternoon for two to three hours. Also very weak and aching muscles and foot spasms. Does any one know if this fatigue can be treated successfully ie any medication that can give a boost

[PMRpro Ambassador]

Afraid not, no magic pills unless there is a cause underlying it besides the autoimmune part of GCA.

However, I see you are hovering at the start of adrenal function needing to return, are you still at 6mg? That is a common cause of adrenal insufficiency - and I doubt your GP has ever mentioned it? A bit more exploration shows you were at 7mg 3 months ago so you appear to be reducing at 1mg per month - I think you might do better to stay at a dose for more than a month and even reduced by only 1/2mg at a time. Your adrenal glands now need to start contributing and they can take a long time to wake up - slowing down might help.

Tell us a bit more - how long have you been on pred below 7mg/day? Have you always had this level of deathly fatigue or were you better at higher doses? Why do you take cocodamol and does it help?

But rest assured that there are members of the forum who have an afternoon nap and they are quite a bit younger than you!

[SnazzyD]

I agree with PMRPro. At doses below 7mg and 30 years younger than you I had to drop by 0.5mg over anything from 6-14 weeks to cope. Afternoon sleeps as opposed to just naps had to be reinstated until adrenal service was resumed. That took many months of slow improvement.

[SheffieldJane]

In addition to the sound advice you have had ( I sleep for 90 minutes every day and I am over a decade your junior). Are you taking a Magnesium supplement. It is the one supplement that seems to help cramps, spasms, restless legs, and sleep, I have discovered.

[Blearyeyed]

There are no magic pills to help , however , it would be wise to get your blood tests done at the GP surgery for certain essential vitamins and minerals when they open in the New Year , just in case you are low or deficient in any of the ones that also cause massive fatigue and weak muscles.You are allowed to request these tests according to NHS guidelines and should be offered them anyway when taking steroids ( point this out in case they query it ).

The tests you need to request are :

Electrolytes

Vitamin B12

Ferritin/ Iron Panel

Folates

Vitamin D

Magnesium.

These nutrients can become deficient and cause Fatigue but Vitamin B 12 deficiency or Folate issues can also cause pain , palpitations, muscle weakness and numbness , pins and needles , brain fog , poor thinking and coordination, insulin resistance, weight gain , migraines , Anaemia and poor absorption of other vitamins and medications.

If you are low in these things you should receive supplements to help. If you are deficient in B 12 you should receive injections to help solve it quickly but also have an Intrinsic Factor blood test for Pernicious Anaemia before the injections start.

If your blood tests are normal but low including a combined vitamin and mineral supplement to your diet after the fattiest meal of the day will help increase nutrient levels which can improve Fatigue.

Reducing processed sugar and artificial sweeteners in the diet can reduce the swings in energy caused by sugar balance changes. Eating smaller size meals five times a day instead of three big ones and just having a gentle little stroll , even in your house, for five minutes after eating reduces lethargy or post eating sleepiness.

Packing in more nutrients to the diet from fruit and vegetables, poultry, oily fish , shell fish , nuts , eggs , bananas help improve Fatigue from the inside.

Internal dehydration causes more Fatigue so drinking the recommended amount of water / fluids each day even if you aren't thirsty does improve Fatigue. If you find yourself feeling sleepy drinking some cool water quite quickly , and before getting out of your bed or seat to do activity , tricks your Autonomic Nervous System to respond to temperature and makes you more alert.

Your body clock makes you want to snooze in the afternoon, this isn't a bad thing but you need to limit it , especially if you have Fatigue. Choose a specific time when you feel most sleepy in the day. Do some gentle stretches before you lie down , not much , just a few to reduce the stiffness in the body . Go to bed for a nap but set your alarm for an hour and get up when it rings after doing a little stretching on your bed and drinking a good amount of water quite quickly before you get up.

Go to bed at a regular time each night and build up a good sleep plan , turning off all devices , TV etc , but also get up at a regular time too.

Fatigue breeds Fatigue .

It's different to tiredness which can actually stop you sleeping. You need to find a balance in your activity which gives you rest but also some physical movement or exercise each hour to prevent the Fatigue getting worse.

At first it will feel a little painful , or like you are trying to walk through a vat of porridge to do anything , but a minimal amount of movement is necessary to help get past this level of extreme Fatigue. No matter how bad you feel if you do nothing else all day move a few minutes each hour you are awake using slow walking about the house and a couple of gentle stretches in a chair to stop stiffness.

In time , increase the amount of movement you do and add in a five minute walk after meals .

It can take time but when that heavy Fatigue starts to leave your limbs you can add in some more physical activity or longer walks in to your day.

Try some simple ankle rotations and foot exercises , and isometric exercises for the arms , hands and legs at first . These will also help the spasms which can partly be caused by reduction in muscle length because if lack of use but can also be caused by the nerves if they are being effected by steroids or PMR side effects or if your nutrient levels are low .

As you can see , Fatigue can be treated but it is usually through Self Care and Careful Activity rather than medication .

[DorsetLady PMRGCAuk volunteer]

Looking at previous post when you said you were on 6mg would hazard a guess it’s your adrenals stuttering - see link -

healthunlocked.com/pmrgcauk...

Only way to get nudge them into working is a really slow taper, rest when you need to and patience ….but if you get any of the other symptoms relating to adrenal insufficiency then you need to speak to doctor.

[piglette]

I just give into it.

[Henriette]

Hi all, my husband was diagnosed with this horrible disease (PMR and GCA) 15 years ago, we get told with every visit to the GP that we have to look at the quality of life and not the quantity, as there is not much time with this disease. I have found a product called Tissue salt in our local pharmacy - for different kinds of aches and pains. We have both been using the one for fatigue and cramps as he gets a lot of these. This is a truly an amazing product as this truly helps with the fatigue and water retention.

Trust this will assist in some way. Also try to take the prednizone depending on how many you have to take on a daily basis, by splitting them for morning and at night time. this also seems to work well.

[PMRpro Ambassador in reply to Henriette]

"we have to look at the quality of life and not the quantity, as there is not much time with this disease."

Sorry, being a bit dense - what on earth did he mean by "there is not much time with this disease."? Unlike most autoimmune rheumatological disorders it it time limited and usually goes into remission sooner or later for over 95% of patients but it isn't life-threatening.

[Henriette in reply to PMRpro]

Exactly my point, it is not for us to say when we leave this earth but for God. Let me tell you nothing gets me under. always been a fighter and will most probably die one. I do not believe everything I hear especially when some of our medical personel does not know much about certain diseases. Makes my blood boil...