Gransnet forums

Health

DD is ill

(69 Posts)
Madmeg Wed 08-May-19 03:48:30

She is 39, with two kiddies age 7 and 5. She's a working mum, being the main breadwinner, working termtime only (and fortunately some days at home). Around January she developed a swollen foot, no pain, and the doc said it was a sprain. A couple of weeks later she developed a swollen hand, no pain, and the doc said that was a sprain too. She was prescribed ibuprofen, but they made her ill.

A couple of weeks later she got cramps in her arms and shoulders, then lost the use of her fingers. Her job entails a lot of keyboard work and she couldn't do it.

Moving on, her shoulders seized up, the ankle was still swollen and pain set in in her arms and hands. She couldn't cook a meal, do her job, bath the kids. Too much pain, and by 6 pm was exhausted.

The doc did blood tests. Some showed low sodium, low folate, low vitamin B and kidney function issues, but after a few weeks of medications these were all back to normal. But the symptoms never changed. 4 months on and she is still in pain, swollen ankle, unusable hands and exhausted. Some days she is fine, others it just gets worse as the day goes on.

She was referred to a rheumatologist. Nothing amiss. She has had numerous blood tests, x-rays, bone scans and a CT scan. All normal.

She is a semi-wreck. She has never been ill before. She is not a wimp, she loves (and needs) her job, she is superb with the kiddies and her husband is a star. She has no money worries (so long as she is able to work - which she can't right now). Her employers are great - they have given her time off, and counselling, but nobody is getting to the bottom of what is wrong with her.

We are baffled. We took the GS to his sport session tonight and when we got back she was crying in pain. She has had numerous different pain killers prescribed and none help.

What could we try next? The medics seem to imply there is nothing wrong with her. But there is. We will gladly pay if needed. But don't know where to go.

BlueBelle Wed 08-May-19 15:10:41

I was thinking Lupus a friends who has it sounds very similar but also Happy is right Lymes can cause similar symptoms I would push for more tests and read up on thise diseases
I didn’t think you got bad swellings with Fibromyalgia though

leyla Wed 08-May-19 15:27:28

Sorry this is no help but apparently there are hundreds and thousands of people who get ill with viruses that are never really defined. Hopefully if it is a virus her body will start to heal itself. Make sure that she is well looked after and stress free. Would you be in a position to take on more of her chores so she can rest (I expect you are already).
I hope your daughter starts to feel better soon.

Luckygirl Wed 08-May-19 15:29:37

Maybe seek a second opinion?

Nonnie Wed 08-May-19 15:44:00

Only read the first page and have no medical knowledge. I cannot believe she can have swelling with no physical problem. I do think it can be difficult for doctors because their time is limited and it is not an exact science so I would suggest she writes it all down and takes it to the doctor time and time again until something gets done. I think if she accepts the situation nothing will get done so she needs to just keep pushing. Good luck

elfies Wed 08-May-19 16:36:59

I would guess at Lymes disease , which can be caused by tick bites, usually showing a bullseye type rash , sometimes months before bad symptoms appear.
I hope you find a name for your daughters problem (and a cure)

JaneJANE60 Wed 08-May-19 18:43:27

Could it be some kind of an auto immune illness? I had a very strange illness shortly after my youngest son was born which turned out to be sarcoidosis. I had never heard of it. Took a while to recover. I know there are many many obscure auto immune conditions. Your daughter has my sympathy and I wish her well flowers

Madmeg Thu 09-May-19 02:14:04

Wow. Thank you all so much for your time and all your suggestions. I will have to write them all down and think about them. I am not dismissing any of them cos I think they are all valid.

I have never heard of Lymes disease so will look at that. The auto-immune suggestions have so far been discounted but I have friends with such problems who weren't properly diagnosed for years. So I am open to any ideas.

I did wonder about a virus, and other things. I also haven't discounted stress (but she is having some sessions at work for stress-relief - and she is a person who suffers that way at times).

Fortunately she is open to all suggestions, so it's just a case of who we insist on seeing next. Hubby and I have agreed that as we inherited his mum's cottage when she died, that we didn't expect to inherit, we will pay for anything that DD needs to get her right. No, we shouldn't have to do that but sometimes it is the only way to sort things out.

Thanks again for all your ideas and your sympathies. It is horrid to see your kids struggling with health issues. We have some of our own but we are in our seventies. She has her lifetime ahead of her.

I will bear in mind your suggestions that we need to fight.

So helpful everyone. Thank you so much. xxxx

Missfoodlove Thu 09-May-19 08:50:10

It sounds like an auto immune disease.
Has she been tested for Lupus?

Blinko Thu 09-May-19 09:41:59

Wishing you and your daughter well, MadMeg flowers

Sourcerer48 Thu 09-May-19 13:41:39

Perhaps it is related to the condition known as Enthesopathy.
www.healthline.com/health/enthesopathy

Madmeg Thu 09-May-19 20:54:05

Another thought. Using her arms/legs does not seem to cause anything at all - she sometimes goes for a morning run and is fine and some days everything works okay. It seems to suddenly deteriorate - starts with aching, then pain, then her fingers don't work properly, or she feels red hot, or freezing cold. Eventually she succumbs to absolute exhaustion. She says she can feel the blood coursing through her arms and often gets what used to be called "restless legs" (which I have suffered with) - but in her arms.

In short, it is a mystery. The swollen ankle seems to be unrelated but it all came on at the same time.

I think the two likeliest causes are nerve problems or a virus. But what do I know?

Thanks everyone.

Meg xxx

Sparklefizz Fri 10-May-19 08:41:25

If she can go for a morning run, it's not M.E. so that one can be ruled out, which is a real blessing for her.

I do hope a cause can be found, and do wonder whether it could be due to something like a spider or insect bite on her ankle which is spreading toxins in her body. I think someone mentioned this further back. As you say that she goes for runs, she could easily have been bitten by something while out running.

Madmeg Wed 05-Jun-19 01:31:37

Hello again everyone. She is no better really, but over half term has managed with the kiddies and declared that adrenalin has kicked in cos she was really worried about coping with them on her own.

Tomorrow she has an MRI scan, I am not sure what sort of thing that might throw up.

Now we have a new dilemma cos her boss has told her she is not performing well (yes, we knew that) and yet she has been head-hunted by another department who have told her that even though she isn't well they think she can still do the job they want her for. It will be a major promotion for her, and already it has made her feel better, which leads me to think her ailments could be stress-related cos she has hated her current job for two years since she took it to avoid redundancy.

Heck, I don't know. Is it stupid to go for a promotion when you are feeling so ill, or do you go for it and hope for the best as I am sure she will respond well to the challenge. Or should she be "sensible" and turn it down at this difficult time? Do such opportunities come along so often that you can turn them down?

Her mother-in-law would say "don't be daft, you can't think about promotion when you are so ill" but I am wondering if it could be the solution - i.e. it has all been stress-related (she has always been given to stress) and a new job could just be the answer.

Anyway, MRI tomorrow, so will keep you kind people posted on what happens.

Meg xxx

BradfordLass72 Wed 05-Jun-19 03:00:59

If you find any difficulty, or resistance, when asking for further tests and opinions, there are health advocates who will support you.

www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/someone-to-speak-up-for-you-advocate/

www.healthadvocacy.org/contact-us

Madmeg Thu 13-Jun-19 22:35:50

Thanks for the link Bradfordlass.

The MRI scan has shown up "small focus high signals on frontal and parietal lobes" (of the brain). The GP doesn't know what they signify but has accelerated her appointment with the neurologist. She has some limited private healthcare through work and the insurers have given her the names of two consultants. One can't fit her in till August and the other is 40 miles away!

If anyone has heard of this brain stuff, please let me know, but as with lots of symptoms they can mean all kinds of things. I just want my DD to find a solution.

Thanks for listening.

Meg

BlueBelle Thu 13-Jun-19 22:48:42

Lupus was my first thought it sounds very like a friend who has lupus
Lyons disease can also cause a multitude of problems and is very hard to diagnose

BlueBelle Thu 13-Jun-19 22:55:47

Sorry I didn’t realise this was an older thread that had been going a while so I d already said the same thing at least I m consistent
Good luck hope you find the answers

Luckygirl Thu 13-Jun-19 23:10:50

I have no knowledge to pass on but just wanted to say I am so sorry that she is suffering in this way and hope an answer can be found soon.