Can't find the right words

Lubs

Hi,
I have left a couple of messages for my rheumatology team these last two weeks. I don't know if they have received them, as no one has contacted me back. So this Friday I emailed the senior consultant with my new symptoms.

Currently, the bowel incontinence has stopped, but the urine retention has deteriorated. I have a lot of lower back pain which is causing my legs to go numb at night while asleep, I have to wake up to physically change positions, which then leads to pins and needles in the legs. I am also suffering from pain in the upper spine which makes it difficult to breath without pain. This is on top of the normal pain in my fingers, toes, hips etc.

I am really tired all the time and sleep in the day up to three hours. I find that I have energy between 6am -11.30am after which I am tired. I easily get confused, just this week I messed up the delivery time (for which my husband took a day's leave) and I nearly missed a Dr's appointment. All the time I thought the appointment was for 4.10, only to realise on the day that it was at 3pm. The GP thinks this is due to my pain relief medication, but this has been happening for some time. Does anyone know what this is? I even make up words or new sayings, which are really funny to my husband, but not to me. Once said I know what I have said is wrong and not right!

I have been signed off work for a further 4 weeks, I really do not know what will happen in this time as I cannot get the rheumatology team to respond.

Take care
Lubs x

mig

Sorry can't help but am sending some hugs (((()))) .Mig

DebbieT

Hi Lubs,

I'm stunned you still haven't been sorted out!! :shock:
((((Hugs))))

My 1st question is ... Are you on any biologic meds? 2nd, wot has ure GP said/done about any/all of these symptoms??

I'm obviously not a medical person just another sufferer I'm afraid but I'd suggest you contact the Helpline Team, the number is at the top of the page, asap for advice. Then I'd contact ure hospitals PALS team, They're the patient liason service & should be able to help you get somewhere with regards to a response, hopefully, from the Rheumy Team!!

As for the things ure messing up, saying wrong, missing etc ... I get it!! I have fibromyalgia & in my world it's known as fibro fog It's hilarious to other people & especially family but I used to find it quite frightening as I've always had a great memory and was seriously concerned that I had early onset dementia, it was terrifying to be really honest
It's caused by long term chronic pain & insomnia. It seems that losing sleep recently may be the likely cause for you ... Does that seem likely? I enter everything into my mobile in the calendar & set alarms or I'd miss everything :oops:

I really hope you get some answers asap!! This really is not fair.

((((Lubs))))

Xxx xxX

Boomer13

Poor Lubs, you sound like you're having a really bad time. I can relate to a lot of your symptoms but I can't remember what you were diagnosed with? Or, are you waiting for a diagnosis?

(((())))
Anna

stickywicket

Some good advice from Debbie there but I would add that your GP should be fighting your corner on this one. He should now step in and get you that early rheumatology appointment.

As for the muddles and forgetfulness - I'm afraid I can't help. I don't have fibro and I don't take much pain relief so, if it's due to either of them, I've no experience of it.

Megrose489

So sorry to hear that things are so difficult for you, Lubs. I do hope you get things sorted out soon. Look after yourself.

Meg

barbara12

Hello lubs
I am so sorry you are suffering like this, I know one thing you should be getting some help, do you take amitriptyline or gabapentin, because I find that one of these...still not sure which one, causes me to mix up words..
I do hope you can get someone to listen to you, please let us know how you get on..x

Fionabee

Hello there.
You are having a rough time. It sounds as if you have pressure on your spine from something?? Either OA changes or a disc, I had a spondylolisthesis. Have you had an MRI or x rays to determine what is going on, I think thats what you should push for.
As for saying daft things, well I think the others have explained well, have nothing to add.
Good luck and take care.

dreamdaisy

Right, if this was me I would be ringing the rheumatology unit helpline on the hour, every hour (even in the dead hours of the night when I'm awake) to force a reply. You need help and at the least they are being sluggardly in their 'response'. I too have to wake up to change position (it's all part of arthritis' rich tapestry :roll: ), I'm also getting the numbness thanks to 'sleeping' sitting up and it's not pleasant (but in my case finite) and the breathing pain could be costochondritis (it's a common 'plaint on here but I am not a doc) - your GP may be able to help with that. As for the rest of it, well, I don't know, but don't sit back being a polite, patient patient - agitate, get your voice heard, fight your corner because no-one else will.

One of the troubles us auto-immuners face is that things can become worse but, being used to a fairly low-level of things being right, we don't necessarily realise just how untenable some things are, we just shrug our shoulders and get on with it. Doesn't make it right, though. You need help - do your best to get it and don't hold back when docs ask you how you are - tell them chapter and verse, OK? I remember my Pa, towards the end of his life, answering the docs 'How are you today?' with 'Oh, I'm fine, thank you.' I love him very much but what a clot. DD

barbara12

Hi Lubs just checking to see if you have get any further on..I do hope so...xx

lululu

Lubs you need to complain to PALS your hospital switchboad can give you the number. PALS will get rheumy people to ring you. Good luck

Lubs

Dear All,

Thank you for all of your replies. My husband felt sorry for me so he arranged for me to visit his parents in a West Wales this weekend. We have just returned.

Before I became unwell I would be able to help with the drive, but now he is lucky that I fall asleep in the car and wake up to take pain medication.

I suffer from PsA, the senior consultant also mentioned that I have AS. However, due to recent events I found that my GP is only aware of the PsA diagnosis. I am on infliximab every 6 weeks with 10mg of MtX (weekly).

My right leg has felt numb all day and night, the GP has said that he will chase up a recent MRI that I had 2 weeks ago. I will contact the rheumatology team again, but I will be having an infusion on the 3rd, so hopefully they should be able to tell me something by then!

I know this is not correct thing to say, but I'm glad that I'm not the only one who is finding it difficult to find the correct words, or coming up with new sayings which make their family laugh. I was really starting to worry as I had not linked this to fatigue but to dementia and MS and I had kept these worries to myself. Thank you for sharing your own experiences.

I leave you with two songs my husband has recently completed, if like me you are feeling a little blue, they will pick you up!





Lubs ()

Lubs

Hi,

Thought that I would let you know that I called the rheumatology team today and rather than speaking to an answer phone I actually spoke to the senior nurse. She has said that she will get the consultant to look at my MRI. However, she then called back and informed me that there is an appointment available next Monday in the afternoon and that she has booked me in to see the consultant. So hopefully I will get some answers soon.

Lubs

Boomer13

That's good news! Please post how you make out with your appointment.

I have a similar combination of axial and peripheral PsA, not really controlled yet.

Take care,
Anna

Megrose489

That's good Lubs. Hopefully, you will get some answers and, more importantly, some help. Take care. ((()))

Meg

DebbieT

Finally!!! Wot a relief.

Please let us know how you get on Lubs?

(((Hugs)))

Xx xX