I was wondering if anyone with APS suffering from unbareable pain?

[APSdsntHaveMe]

I would like to know if drs acknowledge this understand that there is pain associated with the disease? I am always in pain and can not do daily activities because of the pain but the drs act like I am making it up or its not that bad. It's very frustrating.

[jennybee]

Yes I too suffer extreme pain and very frustrating the drs dont acknowledge it, My Rheumy has given me hydroxychloroquine and said that will help but I still suffer with the pain. couple of weeks ago I couldnt take the pain in my feet anymore and went to drs and i was very firm about him doing something about it. so he gave me a short course of steroids, well I think I finally remember what it was like to feel normal again and no pain! Key is to do your research and dont be afraid to challenge the Drs, its taken me a long time to get that point but it seems you dont get anywhere with them without challenging them and telling them what you have researched. Hope things get better and your Doctors start listening to you.

x

[Jane-Martin]

Hi hon, I just looked at your 'about me' and was shocked to see that you have had a stroke and possibly a clot in your kidney, yet you are only on aspirin and plaquenil! Who is taking care of you? If you have had any clotting episodes, you should be on an anti-coagulants such as warfarin/clexane. You will see from many peoples previous posts that joint pain is a real problem for many. I would suggest you get yourself under the care of a Rhummy who has good knowledge ofAPS/ Hughes Syndrome. I think your map suggests you live in UK, I cant see if it is in London or not. But if so, please ask your GP for a referal to St Thomas's Hospital. Others on here will know better how you should go about that. You can also perhaps go privately to get a quicker referal and from there on get your treatment under the NHS at St Thomas's. There is a lot that can be done to ease joint pain, Some people often find the pain is easier once their anti-coagulation is properly managed. That should also help with migraines, which I see you also suffer from. If you dont live in the UK (difficult to tell from that map!) then ask on here if anyone knows of a doctor who deals with APS in your area. I sure hope you get the help you need and start to feel better soon.

[MaryF Administrator]

Hi there, sorry things are currently so rough.. it sounds to me like you need reassessing, taking into account everything you have, and your history to date... can you tell me where you are so we can help with more detail... who does your care? etc

Mary F x

[jessielou]

Hi hon,

Some docs that really understand Aps, do acknowledge the pain, being an autoimmune condition, it can and does cause considerable pain! It is Shameful that quite a few in the med profession still got a long way to go!!!

Hopefully someone on here will know of doc that could help! We're here to help if we can hon.

Take care gentle hugs love Sheena xxxxx

[BrazilianBade]

Hi, there! I know the feeling. I have massive pain and I try to minimize it with hot showers now that I cannot swim due to a hip problem. Phisioterapists have discovered that the muscle around the femur has been lost and I need A LOT OF EXERCISE in an attempt to prevent surgery which now is quite possible given this discover

I also have been doing accupunture to mitigate the pain. In my case it has been quite helpful, even to the hip. I feel better for at least a week before the pain attacks again.

Ah! Have you tried stretching?

I am praying for you. Be well

Bia

[Sal0712]

I was having a lot of pain, especially headaches. I was put on Amitriptyline and have been alot better. Just had my first migraine in two and a half years, and the Amitriptyline made the headaches a lot more bearable. Worth asking about it !!! Hope you find some relief soon x x

[GinaD]

Ditto the pain -- mine is in the left hip, mostly. And super- ditto urging to go see a Dr. who has more success treating APS. They may call Lupus "The Great Pretender," well, APS is the "Greater Pretender," and pain is a common, non-obviously-blood-relatesd symptom.

But given that you are not on much strong stuff, there is a good chance that only minor tweaks to your meds may result in vast improvement.

Go for it.

[APSdsntHaveMe]

I hope to answer all the followup questions. Well the docs confirmed I had an infarction in my left kidney so that was what the clot indicated. I live in Albuquerque NM in the US. My problem now I am not allowed to take my aspirin anymore since my platelets have been going up and down so much over the past year. I am not allowed to do steroid treatments anymore since I have the spinal fluid build up on my brain. I use lyrica for my fribromyalgia which works great to curb the tension migraines and the muscle pain. The joint pain and what I can only explain as bone pain is what has been really bothering me lately. We tired norotin and amitriptaline one made me full of rage and the other I slept for 2 days straight. I am in plaquinil which helps some. As for my hips I get injections low dose steroids which helps so much but like I said docs are being really careful when using steroids. I've done water exercising physical therapy massages stretching exercising heating pads and aroma therapy heating pads. All help which doing them then 15 mins later right back to where I was. I have 4 kids 13,10,6, and 3 and they need their mom as I am a single parent now. I can't stop my life or theirs because of pain and then fatigue because of the pain. I live in a state where docs have been over prescribing pain meds so the regulations and all have become so strict that even the people that really need help can't get it. My rhuemy is also an APS patient as she suffered a CAPS episode. She understands to a degree but I am sure she is on thinners and such. So I am truly at a loss.

[aruss380 in reply to APSdsntHaveMe]

Wow, I really feel for you. Coping with this and 3 children and all their needs too. I have 2 older one's (24 and 21) and only one youngster (7) so I don't know how you manage. Perhaps they are what keeps you going. I think I would have given up by now if I didn't have my 7 year old needing me. When its so bad I want to hack off limbs I go and beg some steroids from my doctor and you can't even do that. If Prof Hughes stops by here then I really hope he has something else to offer you to help you cope.

[Jane-Martin]

Ask your doctor to put you on a trail of Clexane/warfarin to see if that improves things. As you have had a clotting event and having so may other symptoms, you need to be on anti-coagulation of some type and I am very surprised your rummy does not have you on anything.