Menopause Matters Forum

Menopause Discussion => Other Health Discussion => Topic started by: Dorothy on June 27, 2019, 08:34:15 PM

Title: Painful ankles, now swelling
Post by: Dorothy on June 27, 2019, 08:34:15 PM
Evening ladies!

For the past couple of months, I've been getting very painful hip and ankle joints, worse in the mornings or after I've been sitting around, but also bad if I'm on my feet a lot.  I'm waiting for a GP appointment (8 week wait!!!  2 weeks to go)  but in the last couple of days, my ankles have been swelling up intermittently as well.  Am a bit worried.  Do you think I should be pushing to see the GP more quickly? 
Title: Re: Painful ankles, now swelling
Post by: CLKD on June 27, 2019, 08:36:40 PM
Firstly - get your legs above your hip level when sitting and in bed which helps prevent fluid pooling in the ankle region.  Take some pain relief then gently roll both ankles round.  Movement helps reduce fluid.  If you press the swelling, does it go back down immediately?  You may be asked in the morning when you ring your Surgery and ask the question.  In the mean time, keep off the legs most of the time with gentle walking round the house. 

Let us know!
Title: Re: Painful ankles, now swelling
Post by: Dorothy on June 27, 2019, 08:43:01 PM
No, it's quite firm - almost like my ankles' have changed shape!  Thanks for the suggestion - I'll try ringing them in the morning, although I doubt I'll have much success - last time I made an appointment, it was for a breast lump and they thought a 6 week wait was fine for that too (as it turns out, it was, but none of us were to know that at the time!)
Title: Re: Painful ankles, now swelling
Post by: Tc on June 27, 2019, 10:05:20 PM
Dorothy. If it feels spongey and appears as the day goes on or after standing it's likely fluid  as CLKD says. I often get it but it goes down in the morning and  when they are swollen they can feel stiff too. But fluid retention should still be checked out.
8 week wait for a gp is pretty appalling.
Hope you have some luck tommorow. X
Title: Re: Painful ankles, now swelling
Post by: CLKD on June 28, 2019, 04:21:01 PM
You should have been seen within 2 weeks if you had a breast lump, that is seen by the GP and referred to a breast clinic.  I would have 'phoned the breast clinic and asked !!  thank goodness the lump wasn't sinister!

What did you do today about the ankles?  :-\
Title: Re: Painful ankles, now swelling
Post by: Dorothy on July 07, 2019, 12:45:56 PM
Sorry I haven't been back for a while.  Didn't get anywhere - I have to wait to see the GP which is tomorrow. It does seem to be linked to the pain & stiffness, as I've had a couple of days when my joints have felt reasonably ok, and there has been hardly any/no swelling, and when it's really bad, the swelling is much worse.  It also gets better when I take NSAIDs so it does look like some kind of inflammation.  Really hope I get somewhere tomorrow as I'm starting to struggle with day to day routine.  Hands are really stiff too now -finding it hard to type!

@Tc 8 weeks is pretty standard for anything around here.  I know someone with severe depression who had to wait that long, and a couple of others with issues that could potentially have been extremely serious.  Just wonder how many people drop dead during the waiting period because they've not had a serious issue looked at in time  :(
Title: Re: Painful ankles, now swelling
Post by: Ladybt28 on July 07, 2019, 04:13:54 PM
Are you on any blood pressure meds Dorothy?  I had one type of hrt react just like that with the blood pressure meds I was on. The changed the blood pressure meds and it stopped. X
Title: Re: Painful ankles, now swelling
Post by: CLKD on July 07, 2019, 07:06:59 PM
Also: polymyalgia-rheumatica
Rheumatoid arhtirits
HORMONES  >:(

let us know how you get on!
Title: Re: Painful ankles, now swelling
Post by: Dorothy on July 08, 2019, 05:46:08 PM
Annoyingly, I felt better today than I have for weeks, swelling gone right down & hardly any stiffness!  All very good, but much easier to see the doc when you are actually presenting the symptoms you are coming about!

Doctor was great though, actually listened and didn't imply I was making a fuss about nothing!  He suspects psoriatic arthropathy but is sending me for some blood tests and he'll see me again in 4 weeks once he has the results.  He's also given me some prescription NSAIDs and says if I run out of them before the next appointment, I just have to ring up for more.  Huge relief as the flareups are coming closer & closer together and I'm struggling to get through my day when it's really bad.

@Ladybt28 I'm not on any regular meds at all - don't even usually take painkillers, though I've been getting through large quantities of ibuprofen recently!

@CLKD I had wondered if it was just hormones, but in recent weeks, I've suspected that something else was going on.  Just hoping whatever it is, I get a firm diagnosis and ongoing treatment quickly.  My current job comes to an end at the end of September, and it's making it tricky job hunting when I have no idea how this thing is going to progress and whether it will affect my ability to do certain tasks.   
Title: Re: Painful ankles, now swelling
Post by: Tc on July 14, 2019, 09:37:42 AM
Dorothy. Glad your doc was sympathetic and seems on the ball.
Hopefully you will have some answers soon.

I have messaged you.

Best wishes x
Title: Re: Painful ankles, now swelling
Post by: CLKD on July 14, 2019, 10:06:48 AM
Let us know how you get on!

Sadly mental health services have been failing sufferers for many years  :'(
Title: Re: Painful ankles, now swelling
Post by: Dorothy on July 14, 2019, 11:49:57 AM
Thank you both for your support.

Had a bad few days (typical, why couldn't I have had a flare up while I was actually AT the GP instead of immediately before and after!)  but woke u this morning feeling loads better.  Just trying to resist the temptation to go completely mad, rushing round doing loads, which I've learned is likely to make me worse again.  I need to learn the art of pacing myself!

I've had a letter from the rheumatology department saying I'm on the waiting list to see a consultant and they'll contact me regarding arranging an appointment when I am near the top of the list.  They don't say how long the list is, but judging by the GP waiting list, I'm not expecting an appointment any time this century!  At least I've been referred - I realised after I got home from the GP that he hadn't mentioned a referral, so I was a bit worried he was planning on waiting until he saw me again next month.  So it's good he's already put the referral through.

Also, the NSAIDs he's given me are helping a lot more than the Ibuprofen, so I'm feeling more confident about my ability to manage daily life in the short term.  I'll let you know how I get on next month.
Title: Re: Painful ankles, now swelling
Post by: CLKD on July 14, 2019, 12:17:50 PM
Keep us up to date.

My GP types referrals whilst I sit in the appt..
Title: Re: Painful ankles, now swelling
Post by: Kathleen on July 14, 2019, 07:34:56 PM
Hello Dorothy.

My neighbour had psoriasis for years and when she developed stiff ankles her GP diagnosed psoriatic arthritis. She has managed very well with naproxen which is a powerful anti-inflammatory.

Take care and please keep us updated.

K.
Title: Re: Painful ankles, now swelling
Post by: Dorothy on August 07, 2019, 03:45:38 PM
Just been back to the GP this morning (still no sign of an appointment from the rheumatologist and no one can tell me how long the waiting list is). 

It's not been very helpful.  The bloods all came back negative apart from the fact that I'm slightly anemic.  He then just focused totally on this, asking questions about bowel & stomach etc.  I said all that was fine, and anemia wouldn't make my joints hurt like this - I was anemic in my teens and twenties, so know what it feels like!  His response was 'anemia in your 20s is very different to anemia in your 40s'.  Felt like I was banging my head against a brick wall as he kept going on about bowel movements and stomach cramps.

He's sent me away with a cocodamol prescription for the lowest dose available (after the first few days, I got a really bad reaction to the previous prescription) and has said that if it's not strong enough, he can give me the stronger version at our next appointment - in 7 weeks time.  Meanwhile, he wants me to have more blood tests, this time to check for B12 deficiency.  Well the only symptom of that which I have is "changes in the way that you walk and move around" if by 'changes' they mean extreme stiffness and pain...  Tbh, it felt like he lost interest when the bloods came back negative for arthritis, which is fine for him, but he's not living with the symptoms!

So here I am, practically immobilized on some days, trying to get a new job when it's pretty obvious to any potential employer that I'm not going to be much use, and facing homelessness if I don't find something fairly soon...and I have to wait 7 weeks for feedback on blood tests that are almost certainly going to be zero help.  And if the cocodamol doesn't work, a 7 week wait with no medication either  :(  Desperately hoping my rheumatology appointment comes through soon and they are more help.
Title: Re: Painful ankles, now swelling
Post by: Tc on August 08, 2019, 07:53:26 AM
Hi dorothy. Your gp should be able to tell you where you were referred to. You can then phone the hospital clinic and find out when your appointment is.

I did exactly this with a recent referral.and fwas told the date and time of  appointment even though I havent had a letter yet. So it's worth checking yourself.

Xx
Title: Re: Painful ankles, now swelling
Post by: Dorothy on August 08, 2019, 09:42:48 AM
Tc, I'm on the waiting list and have had a letter from rheumatology, saying that they will contact me when I get to the top of the waiting list to arrange an appointment.  They don't give appointments any more because so often people couldn't make them.  Instead, you are told when you can call them to book an appointment.  They can't tell me how long I will have to wait since the waiting list constantly changes (e.g. if people who are worse than I am are referred, I 'move down', likewise if people below me on the list worsen in condition, they will be moved above me)

6-8 weeks for a gp appointment is pretty standard around here.  Waiting lists to see a consultant can be around a year, judging by how long friends have had to wait.  They can't say which hospital I will be treated at as you get sent to the first one in the area that has a 'gap' - unless you specify a particular hospital, in which case, you may have to wait longer to be seen. 
Title: Re: Painful ankles, now swelling
Post by: Tc on August 08, 2019, 10:22:43 AM
I see dorothy.

In my area we seem to be given "choose and book". Where you can chose the shortest waiting time.
I do know from my mums recent experience that this year a new system has been brought in within my borough where all "muscular skeletal referrals (including arthritis)s are "triaged" first.

a year is a long ttime to wait from referral for first consultation. Especially when you are in so much pain.. Take a look at this:

https://www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-nhs/

Best wishes dorothy. Sorry you are having to cope with such pain. Xxxx




Title: Re: Painful ankles, now swelling
Post by: Dorothy on August 08, 2019, 04:30:59 PM
I'm on the 'shortest waiting time' list by default.  The letter says "We will aim to offer you the earliest possible appointment at any of our premises within Aneurin Bevan University Health Board.  Alternatively, you may be offered an appointment with a non NHS provider or at an English hospital site.  By doing this we aim to keep your waiting time to a minimum.  If you request to be seen at a specific location, your waiting time may be longer."
Title: Re: Painful ankles, now swelling
Post by: Tc on August 08, 2019, 05:05:51 PM
Dorothy. It all becomes clear. You are in Wales!!!.   :)

You dont have the "choose and book" option  I was talking about in Wales. But what your letter says sounds similar. If they cannot offer you an appointment within a reasonable time within the NHS hospitals in your trust you may be offered private. That's the same principle.
That's good.

Hopefully you will hear pretty soon xx

 
Title: Re: Painful ankles, now swelling
Post by: Dorothy on August 08, 2019, 06:00:14 PM
Any idea what 'reasonable time' is?  It would REALLY help to know approx how long I have to wait but no one 'official' can tell me!
Title: Re: Painful ankles, now swelling
Post by: Tc on August 08, 2019, 06:48:02 PM
Here you go dorothy.

https://www.nhsdirect.wales.nhs.uk/encyclopaedia/w/article/waitingtimes/

X
Title: Re: Painful ankles, now swelling
Post by: CLKD on August 08, 2019, 08:50:00 PM
You shouldn't have to wait that long for blood tests to be returned.  A GP should know when they are likely to show up, after all they are usually faxed or sent via e-mail.  7 weeks is far too long for simple blood tests.  Maybe get an appt. with the Practice Nurse?

As for co-coda-hwatever - it makes me so ill I can't take it anyway. 
Title: Re: Painful ankles, now swelling
Post by: Dorothy on August 08, 2019, 10:23:34 PM
Standard waiting times here for anything.  Practice nurse almost as difficult to see as a doctor.  The other local surgery has an equally long waiting list.  The council's response is to build several hundred new houses so you can imagine what that's going to do to the waiting lists once people start moving in!
Title: Re: Painful ankles, now swelling
Post by: CLKD on August 09, 2019, 09:19:25 AM
So there's a lack of Staff in the various Hospital Labs. then?  I read so a few months ago, particularly in pathology.  Not Good Enough!
Title: Re: Painful ankles, now swelling
Post by: Dorothy on August 09, 2019, 05:24:36 PM
I know someone who had their op for a brain tumour delayed because there simply weren't enough staff.  He's been told that if the op had happened when it was first planned, he wouldn't have needed any further treatment, but due to the delay it's spread and he now needs chemo and has a much lower chance of beating it.

At least whatever is bothering me is unlikely to be life threatening, and if it is, at least I don't have any dependents.  This man has a wife and two kids under 10.  Puts things in perspective when I'm tempted to get too down about my own situation.   :'(
Title: Re: Painful ankles, now swelling
Post by: CLKD on August 09, 2019, 07:15:03 PM
Why didn't either the surgeon or himself ask for referral to another hospital? 
Title: Re: Painful ankles, now swelling
Post by: Dorothy on August 09, 2019, 10:26:45 PM
No idea.  Possibly no hospital within reasonable distance?  I know someone currently receiving treatment for cancer who has a 5 hour round trip for every appointment because the waiting list is so long nearer to home.  Apparently he's lucky not to have to travel 'far'!
Title: Re: Painful ankles, now swelling
Post by: Sparrow on August 10, 2019, 09:43:27 AM
The problem is the NHS relies on a lot of overseas staff and the EU has made up the largest proportion of that.  Unfortunately less are coming and more are returning home.

I'll say no more on that.  ::)
Title: Re: Painful ankles, now swelling
Post by: Katejo on August 10, 2019, 09:58:37 AM
The problem is the NHS relies on a lot of overseas staff and the EU has made up the largest proportion of that.  Unfortunately less are coming and more are returning home.

I'll say no more on that.  ::)
  Maybe more British young people will be trained up but that takes several years to achieve and costs money  :)