DD is ill

I had similar experience over course of months I was diagnosed with Fibro / autoimmune ( I keep pain/symptom diary everyday) I am B12 deficient so have jabs every 12 weeks. I have also been prescribed folic acid , iron and vitamin D . I have zapain for when pain is really bad . My Gp has just started me on duloxotine which seems to be helping a lot . Pain management , stress management and diet all help but I do get flat ups or if particularly full on day it can knock me out for upto 2 days after . Hope she gets some answers x

I have Fibromyalgia, this all sounds very familiar to me, perhaps she could ask to see a rheumatologist who specialises in it, Mine started about that age, was very on off but seemed to correspond with hormonal changes x

I also thought of Lyme disease - often missed by doctors if someone doesn't have the classic "bulls eye" rash (only 30% of sufferers do), and it is not unknown for patients to receive "false negative" test results. Does she go walking in long grass? Does she live in one of the known Lyme areas of the UK or did she visit one in the last year or so? Bear in mind that the tick bite can have been a year before symptoms appear! Her GP needs to explore further - if not, then how about asking him/her for a referral to a specialist in this area (privately - if this cannot be justified on the NHS/NICE guidelines)? You need to do as much research as you can online. There's a charity called Lyme Disease UK that may be able to help (plus a Facebook group). Good luck.

Sorry, I should have said I hope she gets better soon.

How horrible for you all, and you do feel so much at a loss when the medical profession is stumped.

I would suggest your daughter sees a good chiropractor - there might just be a nerve that is being pinched somewhere.

Could she have been bitten by a tick? I'm not at all sure of the symptoms of borrelia, but it might be an idea to run the possibility past her GP.

Unlikely to be polymialgia, I don't think. I've got it. They can diagnose it through a blood test. Mine was diagnosed by a friend who also had it. It involves a lot of pain in muscles, which is sometimes debilitating - you can't even get out of bed in the morning - but not random swellings.

My friend got Lyme disease and had swollen limbs and unbearable pain. It lasted for months and involved numerous hospital visits and many blood tests. In all she was off work for 6 months and not entirely better for a year. Previously a very fit 38 year old who ran marathons she became almost helpless and extremely tired. It does not always come with a rash, could it be that affecting your daughter.?
My friends doctor took a while to diagnose it, it develops from a tick bite.

What about Lyme's disease? Apparently it's very difficult to diagnose. She may have been bitten by a tick and not known about it. Worth asking the doctor for a test.

I’m so sorry to hear that your DD is suffering .I was diagnosed with fibromyalgia by a rheumatologist, when I was 31 . There was no blood test , although I have had one recent which showed inflammation markers . I really hope she gets a diagnosis soon.

Madmeg you mentioned your DD's test showed she was low in Folate and B Vits was she given the test for Pernicious Anaemia ? It's not always given even when other tests come back with those results.

It sounds as if she has more investigations to go before you get an answer and I hope you and your DD get the information and help needed.

If you feel inclined look up PA, like ME, Fibromyalgia, and CFS it has multiple symptoms. Sometimes we have multiple conditions too.

I push a friend to get tested as she had Fibromyalgia and the test showed she also has PA. Treatment for the PA hasn't cured her but is has lessened the effect of all her symptoms.

Good luck and I hope you find some answers that enable her to either find a cure or greatly ease her pain.

There is such a thing as non reactive rheumatoid arthritis. This does not show up in blood tests but can be seen through mri scan.
Keep fighting for help with discovering what is wrong. I spent a miserable couple of years being fobbed off with it is all part of your IBS or diverticulitis until I reached the end of my tether and insisted on tests. Result showed a large benign tumour on ovary. Something which all doctors had not felt on examination and that includes the consultant!
Wishing you and your daughter all the best.

Sorry 22 read of your DD.
It sounds like it could be some sort if immu e system issue a referral to a neurologist would be a good next step.
I have been in a similar situation many years ago and although it ttook a long while to re over I will never forget the N,s fist words to me after exami ation which were I THINK I KNOW WHAT THE ORONLEM IS AND I CAN GET YOU BACK TO90% FITNESS and he has.
Hope this helps

If blood tests are all normal then I am also leaning towards fibromyalgia and CFS (Chronic Fatigue Syndrome) There are no blood tests for those. It is diagnosed by a process of elimination.

Alot of Drs tend to forget about it because of no blood test. It is getting more and more common.

Diagnosed with people having longterm stressful lives usually. Common in servicemen, police, prison officers and so on. Also in people suffering any kind of trauma or/and going stressful lives. Its personal to what each person can tolerate who develops it.

I have fibromyalgia and CFS and I recognise the symptoms you talk of. Unfortunately whilst it isnt a killer it is life long. You learn to adjust to it however your life has to change dramatically.

If she cant get an NHS Dr or consultant to diagnose the next best is to get a one off appointment with a private consultant who specialises in Fibromyalgia and CFS. They will do a fill report and recommend medication.

She will also be entitled to apply for PIPS as that isnt means tested

Could it be Lupus, a friend of my daughters was not diagnosed for ages until she was hospitalised with kidney problems

I would take her to have a Vega or Physiospect diagnosis done
You would pay privately
But so worth while
Cutting edge technology that can find the cause of many illnesses
I know myself & am now completely well after baffling all usual sources
Do some google searches & see what practitioners come up
Good luck

If it is some form of arthritis cutting out the deadly nightshade family of foods might help

Hello Madmeg. I Aam so sorry to hear about yoir daughter.
In my early 30s I had mysyerious symptoms such as irregular heart beat pains in joints etc was exhausted alot of the time. Tests proved negative but it was thought at the time to be a virus. A few years later I developed atrial fibrillation and had to have nilatetal hip replacements. Research showed that I probably had a condition called fibromyalgia or maybe polymyalga. I still suffer now at times with my shoulders and arms.
It may well be worth perusing that line of enquiry.
Good luck. It is not an easy diagnosis to make.
Sending flowers and sympathy to your daughter. Carole

Have the medics investigated your daughter for lupus? It's a strange illness that takes many forms and is tricky to diagnose. A work colleague developed it - she had swellings and lots of pain.
Really hope you can get to the bottom of it and soon. Good wishes to you and your daughter.

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.

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.

Lupus?

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.

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.

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.

Tell her to get checked for Lymes disease