Waking up with joints hurting?

[travelnut]

I have a bit of a grotty knee anyway but when that is playing up it is only that knee. The last couple of days I've woken up with both knees, both ankles, both wrists and both hands aching and stiff and walking is really quite painful. It can't be activity related as I literally wake up in bed and things are hurting. I haven't had anything like this before. I have APS but, according to several ANA blood tests taken last year, I don't have lupus. I did have the flu jab but that was two weeks ago. Odd that shoulders, elbows and hips seem to be OK aren't being affected. This has been going on for 2 or 3 days now. Any insight into what's going on or advice on how to settle things down?

[Storky]

Sorry you are feeling rough!

Sounds a bit Rheumatic to me. Thats the usual sort of thing you get when you are in a bit of a flare. Being new to APS I dont know if you can get these types of joint pains without any associated conditions such as Sjogrens, Lupus, Fibro, RA etc. I think I read somewhere that it can cause joint pain.

Only thing I can advise is the same as I do for when someone is having a flare.

Up your pain meds so that you are comfortable, that means dont wait till you are in pain, take them constantly over the course of the day until you are sure the flare has gone. Reduce your activities. Take warm baths maybe with Epsom salts or even go to Hydrotherapy if there is one near you and just have a little gentle walk about. Any warm bath type situation is good.

Be good to yourself and try and stay cheerful as your mood only makes the pain worse!!

Hope thats helpful.

[Sue2803]

I have Lupus and APS and get a lot of wrist, hand, ankle and knee pain. All you can do is take pain killers, a short dose of steroids usually helps too. Good luck. x

[Hidden]

I was a bit sceptical about Glucosamine Sulphate especially with the withdrawal of the treatment from the NHS. However I have been taking Glucosamine Sulphate 1000mg twice a day with one cod liver oil capsule in the morning and this has definitely drastically reduced the joint pain and has eased my back problems which would cripple me for weeks on a regular basis. Having started to have my finger joints swell up for the first time in my life I asked around and a friend said that he always takes glucosamine and he has never had any joint problems so hence why I tried it.

I was surprised how well it worked considering the negative comments in medical circles recently.

I also use a pump up plastic Gym Ball and lie on top of it in the morning facing the ceiling and roll it up and down my back. When I first used it I had it fairly soft but now I have pumped it up quite hard and I also twist carefully from side to side. This frees up my back for the day.

I take regular exercise but without the other things this would be impossible.

I do not take Glucosamine with Chondriotin (because of very bad reports)

Hope this is useful

[Stannington-lad]

Sorry that you are not feeling to good. Just a quick message to say that I am having same issues and having a blood test to rule out any Rheumatic as when I was at the Patient Forum in May, there was a Doctor who said that things like this may not be Rheumatic, it could be the Antibodies that could cause this sort of problems in which my GP is trying to find out. This may be the case for you, Who know's.

[Hidden]

Hi there - Yes me too I have developed weird pains in my knees, my feet stiffen up and prevent me from walking - if I exercise I pay for it the next few days. My joints and muscles react and don't like being disturbed !!!. Its as if they become angry and want to rest. I think I aggravate them-maybe arthritis - I don't know. I asked the consultant why I was in so much pain with my feet and I was told its the nerve ending damage due to APS. I have not experienced so much pain before but it seems to becoming worse.If I sit down or travel in a car for any length of time I dread getting up or out of the car because i am so stiff. I feel like I have aged 20 years in a few months and yes it does upset me but i have to accept this is APS !!!! Its tough and none of us deserve it. I would love to find oiut how on earth I got APS. Feel like everything is attacking me inside my body and yes i have strange pains in my arms, head, toes, fingers etc. Some days worse than others. Thought my Heparin would improve things but |I seem to be getting worse !!!!

[jessielou]

Hi travelnut

I believe many Aps patients struggle with this issue. I do too.

The ana's are not always positive in lupus. Indeed many lupus patients have never had positive Ana. I have pos Ana and dx with Aps, with lupus symptoms (consultant waiting for anti ds dna blood test to go positive before full dx with lupus but treating symptoms anyway) and fibromyalgia, due to start on hydroxychloroquinin (plaquinil) on Monday will update on how it goes.

A consultant told me that there is some evidence that plaquinil helps patients with Aps. Take pregabalin (lyrica) n slow release tramadol for pain, things a little better.

Bad days add hot baths, heat pads, gentle exercise and if possible rest!! Listen to your body.

Hope you not in too much pain hon.

Take care gentle hugs jessielou xxxxxxx Sheena xxxx

[paddyandlin]

Hi Travelnut,

I know how you feel i normally wake up with my writs andjoints hurting i was told is is a symptom of the APS and also you can have Lupus like symptoms (Joint pain)with out actually having Lupus and as Jessie has said hydroxychloroquinin (plaquinil) is a main treatment.

I hope you feel better soon and speak to your DOC about this. and everyone else has suggested what i was going to suggect so good luck

[TJSTICKYBLOOD]

In a way this is reassuring to know I'm not along for me i can pinpoint the day it started new years eve 2010 first it was just my fingers but its got worse its my legs feet shoulders its horrible and since its started its happened every single day.Hot baths help me and pain killers.At work I sit down and get so stiff I try to take regular breaks .Infact if I'm in one position for too long it all stiffens.I started plaquenil two weeks ago fingers crossed for some Improvement.

[Hidden in reply to TJSTICKYBLOOD]

If you still check the forum, would be happy to hear about the pains and if they have been resolved?

[TJSTICKYBLOOD in reply to Hidden]

No I’m still in pain stiffness joint pain I’ve learnt to live with it

[Hidden in reply to TJSTICKYBLOOD]

Thanks for the answer. And you are still diagnosed with APS only ? And the planquenil didn’t provide any benefits ?

[TJSTICKYBLOOD in reply to Hidden]

Yes still APS only and yes plaquenil relieved a bit but not a cure

[Hidden in reply to TJSTICKYBLOOD]

Btw, do you know if your ANA is positive and Anti DS DNA?And thank you again for the information shared. Means a lot 🙏🏻

[TJSTICKYBLOOD in reply to Hidden]

ANA positive

[Hidden in reply to TJSTICKYBLOOD]

Thank you much 🙏🏻

[Hidden in reply to TJSTICKYBLOOD]

And if you don’t mind, last question. Did the joint pain start after your diagnosis of APS? If so after how long ?

[TJSTICKYBLOOD in reply to Hidden]

No I was diagnosed much later and had the joint pain before

[LesJames]

Yes, The majority of my joints ache and are stiff. I feel like and old man and have to shuffle until I get the blood circulating. This is the same with any period of inactivity such as surfing on the net or watching TV. I have been checked for RA which is negative. For me nothing seems to work not even exercise.

[Hidden in reply to LesJames]

Les James hey, I was wondering if you got any relief from the joint pains ? And are still diagnosed with aps only ?

[LesJames in reply to Hidden]

Hi, I am on MST tablets ( Morphine) and oramorph for breakthrough pain. I use a tens machine which helps sometimes and recently been given Gabspentin for the nerve pain. I also have Anti phospholipid Syndrome, Sjogrens, and adrenal insufficiency because of long term steroids

[Hidden in reply to LesJames]

Lesjames, thank you for your answer. And I am sorry to hear that you in such pains. 🙏🏻, hope you find relief 🙏🏻