DD is ill

Madmeg how distressing for you all to watch her in pain and struggling. The swelling must surely indicate something is wrong. I hope some wise gnetters with medical knowledge will read your post and offer some suggestions. All I can think of is investigating another specialist opinion.

Sending you and your DD warm wishes and hope you find a solution soon. xx

Hi Madmeg I am sorry to hear about your daughter's ill health. Being in constant pain and tiredness is hard to endure.

Has her medical team considered conditions such as ME or fibromyalgia?

It could still be rheumatoid arthritis, as it is difficult to diagnose in the early stages (and 'rheumatoid factor' isn't always present in your blood with RA).

Could it be post viral?, I had rubella about 30 years ago,no rash,jjust the most excrutiating pain and stiffness in every joint of my body,the effects lasted around 6 months.
I only found out that this was the cause months later on stumbling across information on it.It tied in with rubella my son had,and which I have had 3 times,my GP didnt know about such reactions,it seems women in their thirties are susceptible,I was 37 at the time.

So sorry Madmeg to read about your daughter's illness. I am sorry to say that I have no advice but send her and all of you my best wishes x

Could be post-viral or even an insect bite ? Whatever it is it sounds pretty nasty and the body is fighting it.
Have you been abroad ?

I am so sorry to hear about your daughter's illness Madmeg. There are various different forms of Arthritis plus RA doesn't always show up straight away, as someone has already said.

I have had M.E. for 30 years and although pain is a common symptom plus obviously extreme fatigue, random swellings are not.

There is clearly something wrong, and she (or you) will have to fight her corner to get more tests done to find out exactly what it is.

I wish all of you the very best. x

Sending kind thoughts and love fingers crossed for a cure

Sorry to hear about your poor daughter Madmeg I have two friends and they have both suffered with polymyalgia, not saying your daughter has this but symptoms you have described there are similarities. Apparently polymyalgia is difficult to diagnose, one friend took nearly 8 months for her diagnosis and subsequent treatment before she felt better hope things improve for her ?

So sorry to hear this.....we sometimes wish we could take the illness on ourselves. Hope she gets a diagnosis soon.....I'm also leaning towards ME or Fibromyalgia though I am not a Doctor, but know someone who had similar symptoms. All good wishes

Doctors will never admit that they do not know what is wrong with someone. They always blame the patient.

DDiL developed swollen joints and pain in them, plus feeling very tired, about 5 years ago. As I remember all tests were negative, but doctors were convinced from the start that whatever she had was a form of arthritis. There are many, many versions of this disease, although most people have either osteo or rheumatoid arthritis At various times it was suggested DDiL had about three different types of arthritis before finally, three years down the line, deciding it was an unusual form of rheumatoid arthritis.

There are several charities for people with arthritis at leats one of which has a help line. It might be worth talking to one of them.

It certainly sounds like one of the auto- immune type illnesses.
Please keep nagging on her behalf and I hope she gets a diagnosis and treatment soon.

My immediate thought (unqualified) was a type of arthritis.
DD has Psoriatic Arthritis and initially the best the doctor could come up with was “housemaid’s knee” and “tennis elbow”
I am surprised though that rheumatology investigations have shown nothing. Go back and hassle for a second opinion would be my instinct.
In the meantime, has she tried acupuncture for pain relief?
Powerful painkillers can leave you feeling worse!

Monica's suggestion to contact an arthritis helpline is a very good one.

When I was having problems with asthma inhalers and told by my asthma nurse that there was no alternative, I rang the Asthma UK helpline who gave me some brilliant advice, told me what to say to the NHS nurse and got my problem sorted.

I hope an arthritis helpline could do the same for you, MadMeg

As others have said, inflammatory arthritis and other auto immune conditions are often misdiagnosed, or not diagnosed at all. I’d symptons from 25 and wasn’t diagnosed till 20 years later. I was told bloods didn’t show inflammatory mArjers, despite swollen sore and weak joints. Years later the consultant told me that was often the case with active disease. Pester the Gp and if possible get a second rheumatology assessment

Though I’m sceptical about “quacky” dietary stuff, I do wonder if this might be a symptom of a food allergy.

Would she consider an exclusion diet for a few weeks?

Perhaps I’d better explain a bit more. More husband had an auto immune disease and was told to avoid certain inflammatory foods by the consultant. It didn’t cure but did ease his pain.

Sjogrens?

Tell her to get checked for Lymes disease

I have great sympathy for your DD. Doctors seem to lack curiosity in these cases. I have had a lifetimes of breathing problems and once a chest x-ray and asthma test showed nothing, doctors lost interest. I didn't have the energy to fight the system and I wish that I had someone like you prepared to do it. I first went to a doctor with it when I was 19 and said that I couldn't run up a short flight of stairs without gasping for breath and he told me (as if he was talking to a stupid child) not to run upstairs.
I would do as much research as you can online and contact any support groups covering the most likely illnesses and find the names of the best consultants in those areas. Is there any way that you could pay for a private consultation? It shouldn't be necessary but I suspect that you might find a greater will to find the cause. I hope that you succeed but be ready for a long struggle as you really have to be tenacious and persistent.

Sjogrens syndrome can cover a multitude of symptoms. I have dry eyes and dry mouth and it seems to be the explanation for my painful and often swollen knees. There has to be an explanation for your poor DD's condition which sounds like some form of auto immune arthritis. The Arthritis Today web site may give you some useful signposts.

Why has she not been referred to another medical person (I don't have any medical knowledge so can't suggest what sort)? It shouldn't be just the opinion of one doctor when she is clearly getting worse. I do hope she gets better soon.

Lupus?

Am not a doctor but having suffered from rheumatoid arthritis for a number of years - and having had swollen painful wrists and occasionally ankles - was much relieved by medication when it was diagnosed. It took some time - was thought to be carpal tunnel first- then I used some medical insurance to see a rheumatologist more quickly. Best thing I ever did - quick diagnosis- immediate medication - symptoms subsided- don’t like being on so many pills but it has transformed my life. I don’t know if this is the case with your daughter but it sounds like some sort of auto immune problem.

I knew someone who had similar symptoms, and others, and was eventually diagnosed with Lymes Disease. But it took her doctors about two years to come to that diagnosis, and now with treatment she is fine.