Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

18 yr old daughter too scared to go outside

57 replies

gemlourose · 10/11/2018 21:21

her gp believes that she is suffering with fibromyalgia. at the moment she is on crutches for arthritis in her left hip and struggles severely with constant pain and fatigue. she is now dizzy/lightheaded pretty much every time she stands up or if she is stood up too long, she has also become very clumsy and dropped a boiling mug of tea earlier and burnt herself. the problem we are facing is that she has completely isolated herself from the world because of this, she lost her job which she loved, she didn't have many friends to begin but they are now slowly slipping away as she distances herself from them because she hates people seeing how ill she really is. because of all this she has become too scared to leave the house, sometime I can manage to get her out to go food shopping but that is a very rare occurrence as whenever she stands up for more than a few minutes she gets dizzy again. I work full time so she is alone pretty much constantly so she feels even more lonely, and now she is scared of going outside ever due to her fear of fainting or collapsing in public, I just don't know what to do?? I don't really know what I’m asking here but any advice would be so appreciated

OP posts:
SelinaMyers · 10/11/2018 22:29

Could she do an online course? Is there a support group she could join? I’m aware there might be an age difference that might put her off. Could you advertise for a companion to come over a couple of afternoons a week?

gemlourose · 10/11/2018 22:33

the ideas about support groups are great, I've never heard of one where we live but will do some research for her, its just awful having to watch her like this. she was predicted all a*s at gcse and ended up with nearly all c grades with a few b grades mixed in and that broke her heart as she tried so hard but she just couldn't concentrate in exams, this was followed by dropping out of college twice and then losing her job, so obviously this hasn't helped with her mental health

OP posts:
Bambamber · 10/11/2018 22:37

There are a lot of online support groups, but I think a lot of them are all doom and gloom. So while you may get good support, reading some of the posts can actually worsen mental health.

Has anyone spoken about pacing or the spoon theory?

Bambamber · 10/11/2018 22:37

*worsen poor mental health

Catanddogmake6 · 10/11/2018 22:38

Another one saying that she needs referral to a pain clinic and a big one like the one at St.Thomas in London not any old one. I also think a good investigation to rule out anything else if she has only seen a GP is called for especially with the fainting.

Separately how about audio books and something like an echo dot. That would mean she wouldn’t have to move to turn on music/ stories etc. If she’s housebound can you find her an online community to be part of. Although be careful as a lot of the chronic pain sites are really depressing sites and best avoided. Also soft tactile clothes like PJs - M&S have some in grey with stripes for £32 (£16 top and bottoms), cashmere bed socks, nice body cream, soft bed throw, blanket. Just little treats. Perhaps someone could come to the house to do her hair or nails. Learning to live with chronic pain is really hard and she will need help especially at 18.

Shambu · 10/11/2018 22:38

she is now dizzy/lightheaded pretty much every time she stands up or if she is stood up too long

This is very typical of POTS. Postural Orthostatic Tachycardia Syndrome. Which can go along with Fibromyalgia/CFS.

She needs to have further tests and not just be diagnosed by a GP.

You need to ask (insist) your GP refers her specialists. First off a rheumatologist for the arthritis. Then a CFS/Fibromyalgia specialist. And then a POTS specialist (which a CFS specialist might send her to anyway).

gemlourose · 10/11/2018 22:40

we have asked her gp about a pain clinic but where we are you have to be discharged from every hospital service, so as she is still under orthopaedics she is unable to be referred, stupid rule as the reason she is under the orthopaedics is for her hip, not the rest of her pain which the consultant can clearly do nothing about

OP posts:
Catanddogmake6 · 10/11/2018 22:40

Crossed post with Bambamber but I really do agree about pain sites. She needs somewhere realistic but positive is such a place exists.

Catanddogmake6 · 10/11/2018 22:45

Talk to Orthopaedics and get them to refer you on (or at absolute worst case discharge you so GP can re refer you). You might need rheumatology before the pain clinic but in my experience (and it is just my experience) orthopaedics are not at all helpful with anything like this. Which is fair enough as it is not their area but they tend not to like admitting that.

SophiaLovesSummer · 10/11/2018 22:51

I am about to sign off and create a new account as need to name change - long story, nothing to do with my posting credibility - but just saw this and could not in all conscience read and run.

Has she been tested for Coeliac Disease? I was cripplingly ill (much as you describe DD, almost word for word except with the love of a parent like you) for years, went through every specialism then by chance read an article in the Daily Fail lifted from The Lancet. It was about the research work of Dr Hadjivassiliou at the Sheffield Hallem specialising in Gluten Ataxia (balance) and muscle weakness caused by gluten/undiagnosed Coeliac Disease[CD].

Specifically, CD where the symptoms were not the 'typical' just gastric ones that most GPs know but neurological (IE de facto affecting whole body in different ways) and systemic attack ones (Esther Rantzens daughter lost most of her teens and early twenties to this precise thing as well).

If she has not been tested then please literally insist upon it. Doing just that (in face of huge opposition from GP and specialist) saved my life after I read that article.

I would pursue the above to the end conclusion but, if no joy,would absolutely echo vitamin D deficiency and also look at B12 (there is a great site - something like B12.org??) deficiency as well as Thyroid panel. But above all else I would rule out Coeliac Disease ASAP and take no shit as you do so.

Flowers for you and DD OP, she is very lucky to have you xxx

SophiaLovesSummer · 10/11/2018 22:52

*withOUT the love of a parent like you.

starsorwater · 10/11/2018 22:56

It sounds like she was very bright at school. Could she study from home- OU foundation course? Something like that. It would pass the time when she is alone and help her self esteem.

Also, does she like animals? Would a pet be possible? A cat could be a great companion if you could manage it.

AnnaMagnani · 10/11/2018 23:03

I was also thinking that this v much shouts of a diagnosis of POTS (speaking as someone finally diagnosed in my mid-40s).

All her symptoms might well improved if her POTs were recognised and treated. POTS is also linked with hypermobility which may explain the joint pains and clumsiness (I have the hypermobility as well).

www.heartrhythmalliance.org/stars/uk/

www.potsuk.org/

Redskyandrainbows67 · 10/11/2018 23:03

I love the idea of getting a hair dresser and beauty/nail person in for her bday
I would try and get out if you can at all with her

akerman · 10/11/2018 23:03

Forgive me if I'm speaking out of turn, OP, but has she been looked at for Ehlers Danlos syndrome? I'm not a medical professional at all, but am the mother of two EDS kids. Some of your daughter's symptoms sound quite similar. I'm so sorry things are so hard at the moment.

dontgobaconmyheart · 10/11/2018 23:03

Op this thread really hit home for me, my very similar problems started about your daughters age, it's now a decade later and i am in a similar boat so i really feel for her, it is so difficult to accept, and isolating, and for all the rose tinted rhetoric about the NHS, for chronic and unusual illnesses it can be an absolute nightmare, and highly stressful.

Is your daughter on any medication for the pain OP, if not this would be a good place to start, she needs to tell her GP she would like a referral to your local pain management service and for physiotherapy. If she cannot advocate for herself then she can put in writing to her GP surgery that she consents for you to be allowed to discuss her medical records and that way you can speak to the GP about her directly if that is helpful.

I would also highly recommend trying talking therapy or CBT as a means to her her cope both with how she manages her pain, and how she manages her mood, in my local area you can self refer for mental health services, though in yours you may need to ask your GP to do this. It's not the answer to the problem of course, and the mental health services are very strained, but if she gets a course of CBT out of it then it could be worthwhile.

This is of course not medical advice but the biggest thing that stood out for me was your daughters symptoms regarding dizziness being upright and fainting etc. Have you considered POTS ( postural orthostatic tachycardial syndrome) or it's more common neighbour , postural hypotension - I was recently diagnosed after a decade of trying to persuade my useless health care providers that i was not making it up, after it became so bad i cannot often even sit upright for long periods. In addition my 'fibromyalgia' has recently been diagnosed as Ehlers Danlos ( a connective tissue disorder), again, after years and years of stress, pain and pushing for an answer. The average time of diagnosis for Ehlers Danlos is 8 years and i would say that was about correct in my case. Unfortunately a diagnosis has not helped in the least bit because it is ill-understood, rare, and there are no NHS specialists available other than to manage the symptoms. I am currently entirely bedbound and lacking in most of my autonomic functions at aged 30, but even with the diagnosis from clinical genetics i still visit my GP and he likes to suggest any pain i have is "probably a virus". It is maddening.

In terms of how to support your daughter i would suggest encouraging her where possible to maintain a routine, you do not want her to give up on self care. I find online forums for people with similar conditions a vital connection to the world that i lack; sometimes watching the friends i have left move on with their lives and do things i can't and am not involved with, is simply too much for me, so i find it better to be online, or finding things i can do from bed (and crucially not feeling guilty about the fact).

If she is low in vitamin D and taking a supplement, has the vitamin d level been retested? Has her thyroid been tested? I would also look to be referred to a rheumatologist to discuss her joint pain and receive a proper diagnose as to the cause, and rule out alternative conditions. I find it very helpful to provide a typed list of my symptoms and the regularity of them at these appointments or frankly, it just gets lost in listing them verbally.

I don't want to drone on -likeialreadyhave- but do feel free to PM, i empathise with this so thoroughly it has knocked me for six a bit reading it. I certainly am wishing her all the best Flowers

Acornriver · 10/11/2018 23:04

This reply has been deleted

Message withdrawn at poster's request.

gemlourose · 10/11/2018 23:19

she is currently on cocodamol 30/500 eight times a day, naproxen 500 twice a day then gabapentin 400 three times a day, she says they barely help but gp is refusing anything else

OP posts:
starsorwater · 10/11/2018 23:27

No wonder she is faint and dizzy and clumsy too, on so much medication.

Can you possibly get a second opinion, new diagnosis?

If possible, I would try and do something looking positively forwards on her birthday, planning a day out, looking at FE details, something to signal a brighter future.

CaledonianQueen · 10/11/2018 23:49

I have been in your daughters shoes (similarly became very ill at 19 and had to give up Uni and go home to my parents) and it is hard, she will be depressed and will think that the world has passed her by.

Pain wise, a lovely soft heated throw would help with the pain,

www.amazon.co.uk/Heat-Holders-Winter-Thermal-Blanket/dp/B01CIC1O1G/ref=sr_1_1_sspa?psc=1&keywords=Heated+throw&tag=mumsnetforum-21&ie=UTF8&qid=1541888082&sr=8-1-spons

www.amazon.co.uk/Dreamcatcher-Luxurious-Electric-Overblanket-Settings/dp/B075GWT1XT/ref=sr_1_5?keywords=Heated+throw&tag=mumsnetforum-21&ie=UTF8&qid=1541888082&sr=8-5

Alternated with ice packs that should really help with the pain.

www.amazon.co.uk/dp/B06XC8822B/ref=sspa_dk_detail_0?psc=1&pf_rd_m=A3P5ROKL5A1OLE&pf_rd_p=8e5be0e3-b258-4b06-8b6e-695b24f935a4&pd_rd_wg=zmaNy&pf_rd_r=Z9BEM1SXMA0SWHXC5536&pf_rd_s=desktop-dp-sims&pf_rd_t=40701&pd_rd_i=B06XC8822B&pd_rd_w=jDNU5&tag=mumsnetforum-21&pf_rd_i=desktop-dp-sims&pd_rd_r=7e122a6d-e53f-11e8-bc59-35fea659c2f4

If you can, encourage her to go out in a wheelchair, even purchase one for her. She can jazz it up a bit if she is so inclined. A pretty blanket for over her knee might give her the confidence for going out. If she gets over her initial fear, she might find that it will give her a freedom that she hasn’t had in a while. I found if I carried my crutches with me in my chair, that I was not judged for being mobile in a chair. A mobility scooter is even better although she will likely need some encouragement to try it out.

Have a look on Facebook, there are lots of different groups for people in similar situations. Even have a look for support groups in your local area. I found that other young people going through similar made a huge difference to me. Online friends can really keep you going.

I have M.E and fibromyalgia, I have also realised years later that I have Aspergers. Have a look at the YouTube link below, if your dd is on the spectrum, there are so many books, YouTube videos etc that can help her to understand herself and to gain confidence in who she is.

Otherwise, if your dd is in her room a lot, I would spoil her with soft comforting things, nice lighting, new bedding, soft pyjamas, soft comfortable clothing.

www.therange.co.uk/lighting/floor-lamps/square-spiral-colour-changing-floor-light/#181478,

www.amazon.co.uk/YiJee-Wireless-Bluetooth-Portable-Hands-free-Silver-Base-White-Shell/dp/B06XHH7WWQ/ref=sr_1_28?keywords=color+changing+lamps&tag=mumsnetforum-21&ie=UTF8&qid=1541893461&sr=8-28

If your dd is self conscious about her crutches then this website is good-

coolcrutches.com/

Otherwise, present ideas would be adult colouring books, books on mindfulness, books / a kindle/ an iPad/ tablet/ laptop.

longtompot · 11/11/2018 00:08

I really feel for you and your dd. My yd is also 18 (her 19th birthday is a week this Friday) and has had JIA since she was 9. She has also had and has mental health issues due to it. She has had a lot of help, and after a particularly low point where she tried to take her own life, she has got better. Not brilliant but does see there is a light.
We have also been talking about what she would like to do for her birthday. She would love to do paintballing or a lazer quest type thing, but mobility issues coupled with the fact she has lost pretty much all her friends, mean this isn't possible. I have suggested going to a pottery painting place, something we haven't done since she was little, or having a nice lunch. No set plans yet, but we will see.
Your dd needs to get some more help with regards to her mental health. Its so much easier when they are under 18, to be able to just phone drs and get things done. I don't know if your dd has any issues with phoning people. Mine does and gets seriously high anxiety at the thought of it, but I can't phone on her behalf.
Her a&e visit was also on par with yours. Nurses who I think were being well meaning, but saying silly things like why on earth did you want to do something like that for?
Not sure how I could help, but feel free to pm me if you fancy a chat.

Redskyandrainbows67 · 11/11/2018 01:33

Longtom - you can phone on their behalf. I phoned on behalf of my husband a few times - they just ask he comes to the phone and consent to them talking to me

HPandBaconSandwiches · 11/11/2018 02:47

I’d be scraping every penny I had and getting her to the best rheumatologist I could find privately.

She should be having bloods to look for autoimmune or inflammatory arthritis and possibly an MRI because of the clumsiness and poor power, but those symptoms may well be side effects of the gabapentin.

Get her a proper diagnosis. Then work on self help, psychologist, benefits etc.

I’d be ensuring she’s had proper investigations. She needs a rheumatologist.

Good luck.

AnnaMagnani · 11/11/2018 07:37

She needs to see a) a cardiologist and b) a rheumatologist.

Scraping the money together to see a cardiologist was the best thing I ever did as GP would not refer me.

If you are in London, or anywhere near London you want to see Boon Lim at the Hammersmith if you can get GP interested. He runs the syncope clinic. This is their website.

stopfainting.com/

Mummyoflittledragon · 11/11/2018 07:40

Idk if I’m telling you stuff you already know. Ehlers Danlos is diagnosed by a rheumatologist.
POTS by a cardiologist. You can do a poor man’s tilt test to test for POTS. You need a blood pressure / pulse rate monitor. They cost about £40 upwards. standinguptopots.org/learning/pots-symptoms. You would then need to be referred to a cardiologist specialising in pots. The pots.org website can give you further details.

I have seen a pain management “specialist” on the nhs and one privately. The one on the nhs doesn’t believe in the existence of fibromyalgia and was a complete buffoon. The private one is great and he was my anaesthetist recently. The next level of pain killer for me would be blockers. But I’m having a ton of body work so won’t need to go through this route.

I’m not surprised your dd can’t get more than this level of drugs. I have CFS and fibro. I’ve been through the whole range of drugs right up to morphine. There is a lengthy protocol devised by NICE and the pain management specialist has to adhere to the steps.

Your dd will get pain killers privately than on the nhs. However, I would be looking at better solutions if you have the money. Tramadol is amazing pain wise but the side effects can be horrendous and morphine is the last line of pain killers.

The body work that I have had has changed my life. I have weekly massages from a highly trained specialist massage therapist. I also have Bowen therapy. Bowen could be good for your dd if you can find a really good one in your area. Both of the people I see have suffered from CFS and recovered so they are very knowledgeable and know how to handle very poorly patients. I also used to see an acupuncturist / Chinese medical practitioner. The herbs did bolster me a little. He was an ex GP so again highly trained.

PM me if ever you want any information. This isn’t the extensive list of what Ive done.

Swipe left for the next trending thread