Pain and Hughes

[DawnS]

I have looked up Hughes on many different websites and this is the only one that has listed body aches and pains as a symptom. I know from my own experiences Hughes for some is painful and I have read some of your statements complaining of the pain. So how many of you have daily pain? I know other diseases run hand in hand so I am wondering what pains others here are experience or if I must have more problems than I realize.

[MaryF Administrator]

HI there, yes lots of us have pain and also overlapping symptoms and other diagnosis also. I hope we can be of help to you. Lots of support, friendship and information on here. Best wishes Mary F

[jessielou]

Hi hon

welcome n glad you found us. I have pain and overlapping conditions, but think its more than coincidence that a lot of Hughes patients describe similar pain. Joints, muscles, headaches/migraines, abdo pain etc.

I hope you find the support you need here hon, some great caring and pretty knowledgable people on here.

Take care gentle hugs love Sheena xxxxxx

[DawnS]

Thanks for answering so my next question I know has no easy answer but since we clearly have daily pain why is it that no website ( at least none that I have found) states that as a symptom? I dont get it. They list pain as a symptom for all of the other autoimmune diseases.

[TJSTICKYBLOOD]

Dawn you are askingsuch a golden question I have pain muscle ache and fatigue every single day and wish this was mentioned more so other people understand as this can be a major disablement.

[Gadgets]

Hi Dawn

I am always in pain apart from the odd couple of days or half days during the year when I feel normal and what a luxury that is!

I have Hughes Syndrome with Lupus like symptoms and has a stroke on a plane 5 years ago, in pain ever since.

I guess we try and put it to the back of our minds and just get used to it (what else can we do)

Good luck for the future, Plaquenil and gabapentin and of course warfarin have all helped me to get back up to a far better state than at first.

regards

garry

[GinaD]

As I have posted before, I have a severe hip/pelvic inflammation thing going on. Is it osteoarthritis? poor gait pattern? an undiagnosed autoimmune arthropothy? I suspect autoimmune because the hip inflammation is tied to fatigue and weight loss. But my rheumy does not agree ("Your blood work looks great!") I am benefiting from physical therapy gait training, and muscle rehab (under the therapist's guidance,) and that is indeed helping me cope and return to normal. But a diagnosis? No. At this point I'll take what I can get.

[Lori-Bowers]

wonderful question. I myself have pain daily being muscular, headaches, and it even feels like my organs and bones are hurting. I also have fibromyalgia so that does factor into it as well.

[DawnS]

Thanks everyone. It is so frustrating if websites are going to list the symptoms then I think they should know them first. I mean how many people might have Hughes and write it off because the symptoms dont add up or how many doctors that dont know much about it ( like most around me ) rule it out for their patients because there is far more to it then just " sticky blood " this is an incredible disservice! I read someones blog the other day and we all know bowel issues are there ( another unlisted issue ) and the woman asked if anyone else swelled up like they were pregnant while in a lot of pain. I know I do! Or my favorite yet in the same blog I believe posted by Sue she asked how many have their knees and wrist go out on them.... I was shocked I would have never tied that and to think I have told my dr and I am sure most of you have too and yet it isnt documented anywere? Frustrating......

[Nccarolina in reply to DawnS]

How about unexplained fluid weight gain? Does that go with it too? I have wondered if it was from high blood pressure, hormones,irregular heart rate, but that is controlled with meds. Could it be APS? Will higher doses of aspirin help?

[haley]

I have burning sensations and weakness in my legs and often a deep ache extending into my hips, paresthesias up my spine and constant pain at the back of my head. I have had neurological symptoms since the end of 2005 and all of the usual suspects had been ruled out.

Recently my diagnosis was looking more like TM (transverse myelitis)asI had had a sudden onset of the symptoms including brief paralysis post flu vaccination.

I had been also wondering if my symptoms were from the APS because they say many people have the antibodies and don't have symptoms. I was diagnosed with APS a year ago.

Recent blood work shows no APS antibodies. Now I am thinking that my symptoms are from the TM (inflammation of the spinal cord). I learned about TM from reading about APS. TM is often associated and is also considered autoimmune.

Another doctor I see recommends no gluten, no dairy, no soy to anyone with an autoimmune condition. That adjustment in diet has alleviated the very frequent frontal headaches and improved my GI system.

[MrBigDog in reply to haley]

Hi Haley, like you, I too have the burning (& tingling) sensation, but mainly in my feet and hands. I also have pain in my hips when I stand in one place for very long, (our church song leader likes us to sing 4 or 5 songs in a row). I will also have to look into the GI system problems, I suffer from, and see if the same changes in diet could help me. And, I agree with DawnS, these type of symptoms are not listed on any of the other websites or discussion pages on the net...I just wish there was someone like Professor Hughes or a doctor near my home, (Louisville, KY, USA), that knew more than I do about this condition/disease...

(I am a 51 yo male, Multiple bilateral pulmonary embolism in Sept. 2008, diagnosed w/APS in Feb. 2009, 7.5mg warfarin daily, INR stays between 2.0 - 3.0)

Regards

James

[paddyandlin]

Hi dawn,

I to suffer constant pain. The issue is that Hughes is still relatively a new illness and is seen as a blood disorder the comin problem people see is put on blood thinkers your sorted well in a lit of cases yes the blood thinner stops any more damage but when you have damage don already and you have another condition on to it is hard to get clear info we learning something new every day

Paddy

[tim47]

Hi. I don't have pain in my left elbow! I don't know if the pain in every other joint is caused by Hughes, Reynauds, Srogrens, the arthritis found in hands knees and hips, or a side effect of the massive doses of steroids that I took in the 70s when I had multiple PEs at what we now know was the start of Hughes. A little over a year ago, on a recommendation from St Thoms, I went to a local pain clinic and found them excellent. They don't worry too much about what causes all the pain, they do believe that pain cannot always be proven by physical symptoms, x-rays and the like but listen to the patient's experience. They offer multiple routes for relieving pain, for reducing what may cause it etc etc. I now use Butrans patches, relaxation techniques. I also try pacing myself so that I am not always knocking myself out (see spoon theory). I think that the conditions so many of us have are complex and interact and we can never quite know what is responsible for any particular part of our pain. I accept whatever they can offer to deal with the end result and recommend pain clinics-be warned though that in the UK the waiting lists are amongst the longest.

[WayneL]

My daughter is in constant, although varying , amounts of pain.

It can be simple as an aching hand or as debilitating as a full on migraine and last for days.

her biggest hurdle currently is that her INR's are all over the place and it takes so long for the Warfarin to have any noticeable effect.(about 3 days)

It seems to me like the Warfarin's effectiveness is wearing off much quicker these days.

I have also observed that when her INR's are high, she has seizures on an almost daily basis that cause shaking and her legs give out.

I usually wheel her to bed and let her sleep if possible and check to see she's not falling out of bed when she's asleep.

She currently is taking Tramadol and paracetamol for the pain and it generally, though not always, helps (so she says.)

As for the seizures, shes on Diazepam daily.

Originally, it worked a treat, but now it seems to be a little less effective than it was.

Like you, I have noticed that pain has not yet been included in the list of symptoms for Hughes, but I think that it should be added because so many Hughes patients have pain, but associate it with something other than their condition.

Sorry this is so long winded, but I consider it important that these issues that affect so many people should have the right airing.

Thanks for your time to read this and I hope it helps you understand something of the enigma that is Hughes.