So worried about my son

[Oakcone]

Posting here is desperation really on behalf of my mum re her son, who is beside herself understandably.

He is an adult, usually exceptionally fit gym bunny is now virtually incapacitated and we don't know why.

He had a bad back in the spring (disc issues resolved with rests and I think injections which seemed to improve eventually). Since then he seemed to have been hit by a virus that he just isn't recovering from. This is a guy that is honestly super fit, nothing can stop him sort. He can now hardly walk at times from either all over body aches or random swelling up and agony in joints. He went into A&E at the weekend but they sent him home saying he must just been in recovery from a virus but this is getting into months now.

He's having more bloods taken this afternoon at the GP but my DM is seriously concerned about his mental health as well now as he feels like he is never going to get better.

Any ideas at all as to what I can suggest, I'm worrying about them both!

Unless you have a lot of money, I am not sure this is one to rush to private medicine for. It is probably better to aggressively advocate for him on the NHS.

Those results could be any or all of: infection, autoimmune process or malignancy. All could account for the high CRP.

The low white blood cell count would point away from a bacterial infection but towards a viral one.

Hypochromia is associated with anaemia and there shouldn’t be any, not 14%. It literally means low colour as they are not carrying oxygen. The high count could be compensation for the polychromia.

All the above means he needs a lot of tests and an evaluation by a MDT (multidisciplinary team). This is something the NHS does well once you get taken seriously. Unfortunately, in the NHS these days, you need to shout enough to make this happen.

(If you do have a few thousand to spare though, the private sector is an option. But it won’t be cheap).

Disclaimer: not a doctor, far less a haematologist!

Thank you so much @Newbutoldfather no sadly, there isn't a bottomless pit of money.

He has repeat bloods next week but I am asking him to insist he has the right tests.

Any specifically he should ask for other than repeating the above ?

Thank you

How old is he?

I am really not an expert but you could certainly ask for a couple of cancer markers to be added (maybe ca 199 and PSA).

Aside from those, though, there are thousands of blood tests and autoimmune is a world of its own! I assume he has had the normal liver and kidney function tests etc?

I was trying to think what I would do in your position and I think that I would demand a double GP appointment, which you should certainly get given how ill he is and how long it has been going on. I would then go in with your son and agree on concrete next steps with GP and how these can be expedited.

You really need good specific medical input and someone medical to advocate for him.

@OakconeESR, Ana, thyroid including antibodies. Does he have a rash on his face? Does his hands and/or feet swell up at all? I would still see a private rheumatologist maybe you go with him and explain that you’re at the end of your tether with worry and that this is not really affordable but maybe the rheumatologist can write to the GP so the gp is on the right track? A nhs consultant referral takes 18 months to 2 years and you can’t wait that

Have they looked into Guillain Barre Syndrome?

www.nhs.uk/conditions/guillain-barre-syndrome/

He needs the antibiotics for the infection so must take those. If crp still high they will try to find out why. My ds was given oral steroids for an inflammation which helped after few weeks on antibiotics did not do so much so you could ask if steroids are indicated. Keep turming up to nhs as private tests would rack up in costs very quickly. Ask about SDEC Same Day Emergency Care Unit (SDEC) which is a day patient where all tests can be done or repeated

How you get Guillain-Barré syndrome

It's not known what causes Guillain-Barré syndrome, but it's thought to be caused by problems with the immune system.

It usually starts within a few weeks of an infection, such as flu or a stomach bug. There have also been very rare cases in older adults who have had the RSV vaccine.

When you get an infection, your immune system normally attacks and kills the bacteria or virus. But in Guillain-Barré syndrome the immune system starts to attack your nerves.

Guillain-Barré syndrome can affect anyone, but it's more common in adults and males.

40!

The results I posted were the only bloods he had done.

I am going to try and really push him to get an appointment and not let up but he has a habit of 'not wanting to be a bother'. 🙄🙄

They've not looked into anything yet!

Please get them to consider this. The earlier the intervention the better.

He hasn't any rashes or sores.

I've passed on all the info re what tests to ask for and about guillian Barre syndrome to try and get the blood tests sooner than the end of next week and to try and get a GP appointment next week. I don't rate his chances!

I truly thank you for all your help. It's heartbreaking to see such a live wire, fit man reduced to this.

Well they have taken bloods and given antibiotics re crp infection. Ask - what is the differential diagnosis? I e list of possibilities .
Why/what is cause of this symptom? Where will you refer? What has neuro exam shown if anything?

The below is the AI overview when I put what I think are the most important symptoms into a search:

‘The combination of joint swelling, very high CRP, and hypochromic red blood cells strongly suggests a severe inflammatory condition, such as rheumatoid arthritis (RA) or an infectious arthritis, possibly complicated by iron deficiency anemia. High CRP indicates significant inflammation, joint swelling is a classic symptom of inflammatory arthritis, and hypochromic (pale) red blood cells are a sign of low hemoglobin, which is often due to chronic inflammation causing anemia of chronic disease or iron deficiency.

Likely causes
Rheumatoid arthritis (RA):
An autoimmune disease that causes chronic inflammation of the joints, leading to pain, swelling, and high CRP levels. The chronic inflammation can also lead to iron deficiency or anemia of chronic disease, resulting in hypochromic red blood cells.

Infectious arthritis:
This occurs when a joint becomes infected, often by bacteria. It can cause severe joint pain and swelling, a very high CRP level (especially with bacterial infection), and potentially lead to anemia.

Reactive arthritis:
Joint inflammation triggered by an infection elsewhere in the body (like the gut or urinary tract), which can cause joint pain and swelling and elevated CRP.

Other chronic inflammatory diseases:
Conditions like lupus or inflammatory bowel disease can also cause joint issues and inflammation, though RA is a more common cause of both severe joint issues and high CRP‘

I would discount infectious arthritis as it doesn’t sound like it comes from one joint.

I would probably show that to the GP and ask for advice.

But do respect their expertise, especially if you come across a genuinely interested and experienced one. Their 7 years + of training has value that exceeds my (and others’) amateur but logical sleuthing!

I wish people would stop assuming that he has an infection because his CRP is high. CRP is just a general inflammatory marker - it is not specific - it could be high because of an infection, but it could be high due to another inflammatory process, like the autoimmune ones discussed above.

I have ME and MCAS, if I am on a particularly nasty dip I get very swollen joints and inflammatory markers.
I got it after a virus I just didn’t seem to be able to recover from, along with a lot of orher symptoms.

Look into ankylosing spondylitis too

He might have Post Viral Fatigue. It really is horrific. Just like CFS or ME except you can - luckily - recover from it. I had it for three years. Sounds counter-intuitive if he is already doing nothing but the first thing to do is nothing at all. Take off any pressure on himself to get well or be active for at least a week or two. Act like a convalescent. Just rest in bed at night, aim to shower or bathe and get dressed then sit somewhere sunny during the day, outside for sometime if possible. Zero pressure to do anything else. Try to avoid too much screen time, so get him listening to music or podcasts or meditations/affirmations on healing and energy (there are some by sporty blokes - they are not all hippyish).

Encourage him to take daily supplements of Vitamin D (sprays are said to be easier to absorb than tablets) and iron (herbal iron doesn't cause side effects - Floradix or Feroglobin) as well as a male health multivitamin. Cut out all refined sugar and flour during this convalescence as they can aggravate inflammation. Focus on protein and veg: eggs, fish, meat, some dairy, wholegrains, nuts and seeds and as wide a variety of veg as possible. Add some probiotics like Actimel or live yoghurt or kimchi every day.

After that proper full-on rest, he might want to give himself a very small list of things to do each day. Eg getting back to fitness via a gentle but powerful exercise like Qi Gong or Tai Chi, then progressing to Yoga, bodyweight, bootcamp etc. Walks, gentle swims and cycle rides before running or contact sports. But with lots of rest time every day.

If he goes out, get him to be super-careful of not picking up additional viruses while his immune system is weak - use First Defense or similar nasal spray and antibacterial gel frequently.

It took me six months of taking my exhaustion seriously before I was back to normal.

Did he have any sort of bacterial infection approx 2 weeks before these symptoms started?
A family member had food poisoning, confirmed Salmonella & usual D&V symptoms for days then when those symptoms eased approx 2 weeks after infection developed reactive arthritis. It’s a temporary autoimmune response and can last for months. Similar symptoms, random joint pain and swelling to extent they couldn’t walk or drive. GP referred to rheumatology who said timeline from initial infection to onset of symptoms was typical. They are normally fit and healthy and were absolutely floored by this.

I would echo pp suggesting trying for the rheumatology referral approach. I'm no expert on the blood results but I do have RA. Joint issues and inflammation can make you feel very poorly. Getting a diagnosis can be frustrating and long, but there are amazing treatments that can turn that all around.
All the best and keep doing what you're doing to get some answers.

He's actually managed to get a GP appointment this afternoon! 😱

Will let you all know what comes of it. Can't thank you all enough for taking the time to reply, thank you.

It sounds absolutely awful for you all. I hope you get some sort of help from his GP.

Another update for those of you that were kind enough to reply.

Not a lot came of the GP appointment other than he requested the extra bloods that have been mentioned upthread.

He's still on antibiotics (couple of weeks now) and the weird swollen foot they were prescribed for is still swollen and he still feels rough.

He had that set of bloods taken today so we now wait to see if his CRP is still very high and if anything else is picked up etc

I'll be back!

It’s such a slow business waiting for results and referrals. I hope things start moving for him soon and he starts feeling a little better

🙏🙏🙏🙏