I’m hoping somebody can help. My partner is now 8 weeks out of hospital after a 16 week stay. He was in an induced coma for 32 days. He was on a ventilator for 72 days. He suffered massive muscle wastage. He had to learn to do everything again. His recovery has been remarkable to watch and he is so positive and he’s working very hard every day with his own physio and rehabilitation.
Unfortunately he is suffering terribly with joint and muscle pain. He takes anti inflammatories from time to time but due to the massive cocktail of medication that he was prescribed on discharge he wants to try to cut back or stay off medications now. Has anyone else suffered from this condition. We’re really anxious to know is it normal as the muscles and nerves grow back? How long will it last. Any alternative therapies to help with the pain? We would really appreciate hearing from others and any help or advice you have or just hearing of other people’s experiences. Thank you.
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thirtytwo
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Morning, very similar timings in hospital as your husband. I was very active, strong and a muscular physique pre covid. My shoulders/ biceps are still very sore and keep me awake. My legs and other joints are 99% better after pushing myself, still fall over on the odd occasion which my wife and kids find hilarious
I do my own exercises which are circular motions and 2kg dumbbells. Soak in the bath every night and use tiger balm. I massage them myself. The cracking and sounds are amazing. Do press ups but on his knees, I did 15 proper ones for mental awareness and ended up face planting, haha.
I only only just starting to see the shoulder/ bicep rewards as of this weekend since mid May.
Keep pushing and he will turn a corner. If you chap needs to talk about let me know and we can smash this together.
Morning thirty two sounds like your husband is doing amazingly well👍
Has he seen a dietitian? They can offer good advice and when I was very ill they prescribed me drinks really high in protein, there are loads of different ones and some have 340 calories in 125ml!
Dr’s in my experience are really not keen for you to use herbal/alternative medicines, mainly because not enough studies have done out most of them and sometimes they react badly with other medications! I have had that conversation a few times😬
I think it is great he is trying to reduce his medications, but I also know from personal experience that when I tried to stop completely taking a steroid called prednisolone that the joint pain was terrible and had to go back onto a very small dose which stopped this! Apparently some of these drugs stop your body producing cortisol and when you stop taking them it can take a while for your body to start producing it!
This is all from my perspective as a transplant patient and I have no medical qualifications.
I too was sedated / ventilated for 6-8 weeks and had tremendous muscle loss. I had rheumatoid arthritis before going into hospital and not for corvid. Pneumonia, possibly sepsis and heart op.
Firstly having come out of hospital my RA seemed to be in remission and wasn’t on my RA drugs however it came back with a vengeance however I haven’t returned to all of my previous drugs.
As far as exercise is concerned I have found that taking it steady has been better for me. Whilst I came out of hospital mid March I didn’t start the exercise regime until June with ICUStepsChester where we do, via zoom, chair exercises twice a week and chair yoga also twice a week. We all work at our own pace and I moved up from small to large tins as weight and I have now got weights and have started to progress from .5 to 1 kg
Goals that I have achieved are being able to lift a kettle to make a cup of tea, to get out of a chair without using my hands. Whilst my balance isn’t right , touch wood, I haven’t fallen over recently.
I have managed to decorate a room - it just takes longer and I am dismantling a shed again very slowly - a sledge hammer is out of the question.
There is no normal each is different.
Oh and nerve ends cause aggravation but they will sort themselves out.
I’ve copied & pasted a section from icusteps.org - guide to intensive care
How a critical illness can affect your body
Weakness and weight loss
Donʼt be surprised if you feel very tired and weak at first. Your muscles will have lost strength while you were ill and not active. The longer you were ill for, the more your muscles will have weakened. This muscle loss happens faster for patients who have been on a breathing machine.
You may also have lost a lot of weight because of this muscle loss. You will put weight on again as you begin to get better and exercise.
You will get stronger, but it will take time. Physical recovery will be measured in months rather than weeks, and it may take up to 18 months for you to feel fully better. Set yourself realistic goals. Keeping a diary that you can read at times when you donʼt feel so well can make you realise how much progress you are making.
Even if you donʼt make a full recovery, you can still achieve a lot and live a full life. There are people who have been critically ill for months, and a year later, youʼd never know what theyʼd been through. Try to stay positive, even if it means making some changes to the way you live.
Breathing
You may have needed to have a tracheostomy. This is a procedure to make a hole in your throat and insert a tube, which is connected to a ventilator (a breathing machine). The tracheostomy makes it easier for you to breathe and to reduce your bodyʼs need for the ventilator. If you had one of these you will have a scar on your neck where the tube was inserted. The scar will gradually fade and become less obvious.
Keep doing the breathing exercises the physiotherapist gave you to strengthen the muscles and reduce the risk of chest infection.
Your voice
If youʼve had help with your breathing, your voice may have changed. At first your throat may be sore so donʼt strain your voice. Try to relax as much as you can when you speak, and drink plenty of water. You may have marks at the corners of your mouth caused by the tape used to keep your breathing tube in place. You may also have a dry mouth caused by a lack of saliva.
Your skin and hair
Your skin may be dry or itchy after your illness. Moisturising it regularly can help stop this.
You may notice changes to your hair and some of it may fall out. This is not unusual and can even happen months after you leave hospital. It usually grows back but it may be more curly, straight or thin, or a different colour from how it was before.
Bruising
If you were on a drip or had other tubes in you, you may have bruises and scars. These are usually on your hands, arms, wrists, neck, groin or sides of your chest. You may also have bruises on your stomach because of injections to stop your blood from getting clots.
Changes to your hearing, taste, touch and sense of smell
Your senses may be affected by your stay in the ICU, but the effects donʼt usually last for very long. Your hearing, sight, taste, touch and sense of smell may have changed, which can be upsetting.
Some of the drugs you may have to take can affect your hearing. Other types of drugs can leave a metallic taste in your mouth.
You may have been fed through a tube into your stomach, or by a drip into your veins. When you begin to eat and drink normally again, food may taste stronger or just different. Your sense of smell may also be affected because it is closely linked to your sense of taste.
You may have sore, dry eyes because you were sedated for a long time, or your eyes may be puffy and swollen because of the fluids you were given to keep you hydrated.
Things that touch your skin may feel odd and you may experience tingling in parts of your body. This can be caused by some of the drugs you were given or by your bodyʼs reaction to your illness.
These changes are usually temporary and should disappear over time.
Problems going to the toilet
When you were in the ICU, a doctor may have put a tube in your bladder. This is called a urinary catheter. It drains urine from your bladder and allows the staff to check your fluid levels. When the tube is taken out, your muscles may be weaker so you may find it difficult to control your bladder. Donʼt worry, this usually returns to normal.
If you have problems urinating, you may have an infection, so see your doctor or a nurse as soon as possible. Symptoms include:
• not being able to pass urine for several hours; • having a burning pain while urinating; and •blood in your urine.
Sometimes medication can change the amount and colour of your urine. It may even affect how often you go to the toilet. The medication may also affect your bowel movements.
If youʼre worried about any of these things, talk to your doctor about them.
Because I have a form of lymphoma & leukaemia ( discovered whilst I was in ICU)I had regular bloods taken after ICU. It showed I had Vit D deficiency, magnesium & potassium deficiency. Whilst none of these in essence where the cause of the musculoskeletal pain - this was a legacy of chronic muscle waste & being proned - by replacing the mineral & vitamin deficiencies, the level of discomfort reduced. Light exercise & high protein diet helped - also eating protein at the right time of the day for my body to get greatest effect, helped too.
Thank you for all this information . I’ll look up this on the ICUSteps. I think that’s a good idea to check vitamins & magnesium and potassium levels again just in case. He seems to have put on muscle but is so stiff and sore. we don’t know is it normal or how long it will last, is it nerves or joints or muscle pain? It’s hard to watch,
It’s definitely a common side effect - not only do the muscles waste away, they also shorten. I bet he struggles climbing down ( stairs) as much as going up.
Hi, my husband was ventilated for nearly 6 weeks and lost every ounce of muscle. He was told when he came off the vent he was the floppiest patient they have had. He has been in immense pain with his muscle's joints and nerve end pains.
We are fortunate he has amazing physio's, it took him 6 weeks to be able to stand, he actually walked 4 miles last week in one day, he came out of hospital in June , we have a long road ahead of us as he has critical nerve end damage.
My husband was in agony with his legs and feet, occasionally his hands , but it is dissipating slowly. He still has pain in his feet - one much more than the other . He states his feet feel clumpy as if something is crawling in them.
He had hypersensitive feet and legs, we couldn't touch them, but thanks to tricks and tips from the physio's again that has improved .
He has an enriched diet that features , lots of fish, chicken , spinach, green veg etc. I also got him some B12 vitamins .
Please feel free to message or ask, happy to help .
Thank you for sharing all this information. 4 miles is a massive walk that’s an amazing accomplishment. Has he gained a lot of muscle and weight back now?
It’s interesting to hear about the feeling in his feet. This seems to be a common issue with coma patients.
6 months on, having been ventilated for 6 weeks, I lost 18% of my body mass. Everyday I wake in pain from top to toe, every joint aches. In particular my left shoulder- it is excruciating. I can’t take anti inflammatory drugs because of Warfarin. I still need Tramadol, Gabapentin and Amytriptiline- it helps. It is getting easier. They tell me the nerve pain could take as long as two years to recover. I joined a gym and do regular gentle exercises. You learn to live with it, it does get easier but it is not a quick fix. Good Luck.
Thank you for sharing your story. this all sounds very similar to him but he is lucky to be able to take anti inflammatories. This means he’s able to exercise every day other wise he wouldn’t. Getting to the gym is the next step hopefully
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