Lesley_D11 years ago

Yes, I do, mainly in my ankles, knees and hips - I was told by doctor at St Guys Hughes clinic, that this was lupus symptom, although I am lupus negative for testing. So yes I have pain, but don't know if it is also a Hughes symptom. I was prescribed Plaquniil to ease the symptom.

Hope the pain improves

Lesley

Hidden• in reply toLesley_D11 years ago

I too have been told I was Lupus neg but I have every symptom of it. Sometes I wonder if the test was right. I am also on plaquenil. One doctor took me off of it and this time around it does not seem to be helping like it did before. Now I have to take narco for the pain.

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Ibfrostybrew• in reply toLesley_D6 years ago

I have pain in my bacl, knees and feet, plus spinal stenosis. I'm in the VA system so all the only med I can get is tramadol, better the nothing I guess.

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HollyHeskiAdministrator• in reply toIbfrostybrew6 years ago

Hi, can I suggest you re post your own question, this is over six years old?

Worth asking others and re starting this thread?

I am turning this one off so not to confuse.

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Wenz1511 years ago

YES! This is where it all started for me with going to the doctor because my wrists, hips, ankles were so sore! Somedays I would be in tears it felt like all my bones were broken and then someone was twisting them. Very painful. I have now been put on methotrexate and after 3mths I have noticed such a difference! It is not nice being in pain, takes a lot out of you. I'm still not 100% pain free .... but I would say 90% there.

Tonkawoman6911 years ago

Hi, I am newly diagnosed with Lupus and Hughes. I mainly get joint pain in my arm and hand. I get stiffness in my legs and pain In my back and hips amongst other symptoms. But I'm not on any meds except warfrin as had a few problems with my rheumatologist miss diagnosing first time and discharging me have to be referred again. I have made a complaint as this had delayed my treatment and really unwell. Awaiting to see what happens.

Hope you get right answers to help your pain. Tramadol works well sometimes.

Andrea x

Manofmendip11 years ago

Yes, I do in my knees; not good for a cyclist.

Best wishes.

Dave xx

CanaryDiamond10• in reply toManofmendip11 years ago

Hi Dave,

They have a TENS unit especially for the knee. VERY GOOD for a cyclist! Google it. My Hospital recommends EMPI ACTIVE. I am sorry I can't find a web address, but here is what I could find. Customer support: 800-328-2536 Mon. thru Fri. 8:00 am to 5:00 PM Central Time.

Patient Advocate, 1430 Decision Street, Vista, CA 92081-8553 or the Accreditation Commission for Health Care at 919-785-1214. I don't know the American exchange number but your local telephone operator will.

It works, most importantly drug free! I hope you can get access or an equivalent there.

Warm wishes,

Canary

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jessielou11 years ago

Hi Hun

Yes pain, back, hips, feet, hands, neck n shoulders! I'm on Plaquenil, tramadol slow release and pregabalin all of which help, but nothing gets it all.

I hope your docs can find something that helps with the pain, it's miserable at times!

Gentle hugs love Sheena xxxx

CanaryDiamond1011 years ago

Yes, my entire skeletal system aches ALL the time,however true pain (that I rate 7 or 8 out of 10) is in the fingers/wrists, neck, spine vertebra: L4, L5 and S1, my hips (new), knees, elbows and ankles. I could not say I attribute bone pain to APS. I have so many diagnoses now that any one of them could be responsible at any time. In particular, when the weather changes so does the pain.

I use a Fentanyl 72 hour duragesic dispensing 100 mics/hr. I supplement with 2 Vicodin 5/500 mg twice/day and more if pain demands. I don't know where your pain is. If it is in the neck, shoulder, lower back or knee there is a device called a TENS unit. It works like white noise and is heaven for acute chronic pain. They gave it to me with the diagnosis of spondylolithesis of vertebra in lower back. It is a belt so it gives you mobility. There are no pharmaceuticals in it. TENS is an acronym for Transcutaneous Electrical Nerve Stimulation. You can Google it and 100 companies will give you pretty good explanations of how it works. All I can attest to is...IT WORKS! After being flat on my back for 3 weeks, I wore this belt 30 minutes on (you won't want to take it off) and a heating pad for 30 minutes (you won't want to take that off either) alternating. I haven't taken Vicodin since I have had it. If I have the patience to let it work, it does and I don't need so many opiates. Although my doctors would have me on them as a prophylactic, I have seen too many people get addicted to them. I only take them if I'm a step away from the emergency room.

I'm very sorry you are in pain. You might also as your doctor for aquatherapy. It helps your entire body. The water in the physical therapy pool is extra warm and usually your PT will design a program especially for your body limits and pain threshold. Again, drug free pain reliever that not only takes away pain but strengthens your body.

I sincerely hope you find what works for you. At least you can ask about it. The TENS unit is what got me back on my feet. I still take it very easy as it is my first week up and around.

Good luck, Miss186! Keep us posted.

CanaryDiamond10

stillwaiting11 years ago

Yes - wrists, hip, ankles, also the long bones in my arms and legs. Most painful is my feet - x rays showed lots of white patches. . Once my inr stabilises I am starting meds for the pain.

donnabrain11 years ago

left knee, left ankle, both elbows,muscle aches,shin bones,left heel(but I think that is a spur)and right hand and arm from elbow down,plus migraines.think thats all,thankfully not all at the same time

Hidden11 years ago

Yes, and it is related to Hughes syndrome because it is a symptom of many autoimmune conditions. Please see more info at: hughes-syndrome.org/about-h...

CaliforniaGail• in reply toHidden11 years ago

I'm on Plaquenil, but my mild pain doesn't sound like arthralgia but from my rheummy's diagnosis of UCTD. Both are common to APS, as we share so many symptoms in the "autoimmune family." I only test positive for APS, with the cardiolipid antibodies, not LA. Which was my reason, by the way, for trying Coagucheck self testing-- alas, I only got the false high positives (over 8.0) so that was one expensive $1,000 tester loss.

I thought this was a good article which tied together my APS, Raynauds, UCTD & penniculitis, with joint stiffness and mild discomfort.

voices.yahoo.com/what-undif...

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CaliforniaGail• in reply toCaliforniaGail11 years ago

Another comment, I guess the main thing from your link is that arthralgia pain is from the bones and is not inflammatory. UCTD (or MCTD, "mixed") is inflammation between the joints. My inflammation numbers are always way high, along with the C2 and C4 being depleted in fighting it. Although I did not have that much stiffness and pain, my rheummy said that with my inflammation so high, along with the penniculitis bumps suddenly appearing, I should be on Plaquenil. It's been almost a year. No problem with it except for some stomach upset the first month.

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momtomany11 years ago

I also suffer from joint pain. My first symptom was leg pain that radiated from hip to foot, but my hands, shoulders, and sometimes wrists and feet hurt daily. I cannot tolerate NSAIDS, so my doctor has me on a maintenance dose of steroids, which usually helps but is currently not helping so I also take vicodin.

I will say that when I was taking plaquenil with the steroids I was virtually pain free. I was recently taken off plaquenil which probably explains why the steroids are less effective this time around.

Hidden11 years ago

Thank you KateH for your info!

Kerstin

xxkellywxx11 years ago

I have pain in my lower back, ankles and hips xx

tim4711 years ago

Yes, usually everything except my left elbow! Though for ten days or so, and for reasons neither Prof H nor I can figure, most underlying pain that I've had for years has gone all of a sudden. Doesn't take long for various parts to become painful after exercise again though.

I have often thought that there may be different stages of activity of Hughes and Sjogrens that result in the degree and parts hurting vary but at the moment I'm just making the most of the respite.

Willa11 years ago

Talk to your dr. about Plaquenil. I was in a lot of pain, and my dr. started me on that. After a few months, the pain in my joints and muscles have lessened.