CRPS/RSD--Headaches, Ocular migraines... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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CRPS/RSD--Headaches, Ocular migraines, back of head feels squeezed!

A year ago after an ankle injury that would not heal, I was diagnosed with RSD.

I have many of the classic symptoms. Constant pain which I can describe as burning, crushing, or tingling. I have decreased sensation, temperature changes, the color & skin changes--all on my affected side.

I have insomnia, mood changes--I am very grumpy! I kept getting headaches, and now I'm becoming depressed. But what is happening lately are a variation of symptoms. I would like to know if any one else has had similar problems with this diagnosis.

I have been having difficulty finding words, Have 2-3 bilateral ocular migraines per day with aura like visual disturbances( Scotoma) and no headaches.And I have these gripping like feelings to the back of my brain.

I don't know if there is a relationship to CPRS or RSD, but would love some feedback. Thanks.

Written by

racemiami

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19 Replies

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MaryFAdministrator9 years ago

Hi there, sorry about your headaches, do you have a diagnosis of Hughes Syndrome/APS? MaryF

racemiami• in reply toMaryF9 years ago

Maybe I am in the wrong forum.

Manofmendip9 years ago

Hi there.

I must ask the same question as my colleague, Mary. Do you have a diagnosis of APS/Hughes Syndrome?

Dave

racemiami• in reply toManofmendip9 years ago

No I do not....I may have placed this in the wrong forum. I am going to try to change it. I wrote this on this thread because I saw some people with similar complaints(ocular disturbances and possible strokes) and wanted to know if anyone had CRPS.

I looked back and saw that the CRPS questions are linked to the Pain Concern section--

Panda7366• in reply toManofmendip6 years ago

Hi I have only just joined and can completely understand wherever you’re coming from as I had an ankle injury 9months ago, it was a misdiagnosed Achilles rupture and then I was taken to hospital with a suspected TIA and two weeks later was told I had Tendinopathy and CRPS but that’s as far as I’ve got

HollyHeskiAdministrator• in reply toPanda73666 years ago

Hi and welcome, you have answered a very old post.

Do you have a diagnoses of Hughes/APS? As this forum is for people with this syndrome, it relates to thick sticky blood.

If you have, can I suggest you post your own question.

As this thread is unrelated and very old I will now turn off posting.

racemiami9 years ago

It caught my eye, as my mother had the same pain in back of her head. She had a lot of auto-immune problems. (Lupus, Rheumatoid Arthritis) And my older sister has an auto immune disease that has not been diagnosed yet(lots of skin issues). It was a reach to see what the heck is going on with me.

Thanks.

MaryFAdministrator• in reply toracemiami9 years ago

In view of your family history I really suggest you get tested to rule this out. The blood tests are here: hughes-syndrome.org/about-h... Please take the forms and do them at the hospital as the samples taken are time sensitive, if in the UK we have a list of recommended specialists across the UK for Hughes Syndrome/APS. MaryF

Lure29 years ago

I think you better stay here a while and read on

hughes-syndrome.org/sel ...

Theseautoimmun illnesses are diffiucult to understand and often go hand in hand (Lupus/Sjögrens/APS(Hughes Syndrome) and Thyroidea.

Good Luck from Kerstin in Stockholm

racemiami• in reply toLure29 years ago

Thanks so much I will,

racemiami• in reply toracemiami9 years ago

I have been offline for a bit, My sister begun to feel terrible, having bad stomach pains. They did blood work and it was all off.

Took her to the hospital and she got diagnosed today with a rare Leukemia--Hairy cell leukemia. Going to be getting chemo. So I will off line again for a while.

Lure2• in reply toracemiami9 years ago

Sorry about your sisters illness!

Give my love to your sister but do not forget to take care of yourself please! Come back to us soon.

Kerstin in Stockholm

Liz599 years ago

I have almost all of these symptoms and was diagnosed with APS over 30 years ago by a rheumatologist at Lahey Clinic in Burlington MA. My current doctor is not very knowledgeable about it and as result I think he believes I am a hypochondriac. I am in some kind of pain and have headache faily, the severity is the only thing that varies. I am now finding a decrease in quality of my vision. How can I educate my doctor or locate someone more familiar with APS in my area.

Lure2• in reply toLiz599 years ago

Are you anticoagulated for APS? Does it works?

Kerstin in Stockholm

racemiami• in reply toLure29 years ago

Well, I thought I was getting all these little strokes, so I started taking Vitamin E and aspirin 81 mg daily. I haven't had another ocular migraine in 2 weeks.

Debbweb019 years ago

Yes I was DX'd at my eye doc with ocular migraines! They said they saw something in my eyes that told them that! DK what they saw??? I've had auras and slight gray areas of blindness on bottom part of left eye! I was diagnosed in October of 2015 with APS! I don't think u made any mistake by coming on this forum! They're very helpful here and maybe you need us to help u thru your diagnosis! Let us know how u make out! Are u in the UK? I'm from USA & am amazed at this forum! Nothing like this in USA!!!

racemiami• in reply toDebbweb019 years ago

Oh Thanks. I have a few responses.

I am in the USA--Miami. I had my eyes checked 5 months ago, but wasn't getting these frequent eye distortions and halos. I guess I need to get it checked out again.

racemiami• in reply toDebbweb019 years ago

I'm in Miami ....Sorry I haven't been on to answer you sooner.

Debbweb019 years ago

Hi I havnt been on the site in a couple of weeks! Been hectic lately! I hope u r doing well and got ur eyes checked again! Keep in touch