Scleroderma & Raynaud's UK (SRUK)
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I would like to ask members of the forum what their experiences are regards loss of balance and dizziness?

I have had reynauds for 17 years and only been diagnosed with Scleroderma this year. As we all know Reynauds is a problem with circulation. Over the past 2 years I have experienced balance and dizziness problems, after various consultations I was advised this was due to anxiety/panic attacks.

What I have noticed however, is that these problems have got worse over the last few weeks since the cold weather set in. Yet during the summer months I did not suffer with this problem as much. It seems that the cold could be linked to the balance/dizziness.

Does this strike any chords, or is the cold attacking my sense of reality as well?!

13 Replies

I was watching a youtube video the other day where an American doctor was referring to auto immune disease. He was suggesting that a whole host of individually named conditions were actually all related to some degree or another.

I tend to share this viewpoint. I have dizzy spells occasionally . Most often when I am tired. The change of the clocks has changed the daylight patterns and it may be making you more fatigued than usual???

I also think that some of the meds used to treat the various aspects of the condition come with some interesting add ons.

With adequate rest, a reasonable diet and by limiting stress, its easier to manage the symptoms.

I think some doctors are at a loss to explain symptoms and look for a handle, any handle to attach them to.

I had a really severe dizzy attack recently. I went to the GP who was at a loss to explain. I felt a bit sorry for her as she was a registrar GP and I think I overloaded her that day. But she was stumbling more than me. metaphorically speaking.

Look at your meds. Especially if they have changed recently. Could you be in a flare? Have you been doing anything different recently that may have contributed?


Thank you for your reply. It interests me in that the auto immune system was mentioned. This could be an important factor.

Scleroderma is an indiscriminate adversary because it can attack any part of you. The medical bottom line is that they don't know what causes Reynauds or Scleroderma.

My meds haven't changed, other than upping the nifedipine dose,and the Rheumatologist recommending aspirin. I have been taking this new med for 4 months so that won't make a difference. It's the fatigue that is annoying....sorry, your not an agony aunt! Thank you for your input. God bless.


I have both of these conditions.. Raynauds for around twenty and scleroderma just diagnosed... Have they tested your lungs and heart yet..? I had my lungs tested and it appears they are affected In some way.. I'm waiting for a proper explanation from the rheumatologist.. But I get dizzy spells and I think from reading it's due to reduced oxygen in the blood.. I'll let you know when I find out more..


Hi Jp, yes I have had ALL relevant tests, heart, lungs, stomach, blood tests, etc. These tests and others are ongoing on a regular basis to determine how the Scleroderma is affecting.

The main problem so far has been diagnosed as Idiopathic Systemic Pulmanory Fibrosis on my lungs. Scarring in laymen's terms. My BP is always low(side affect from nefedipine), also my pulse has been erratic recently.

Thank you, I appreciate your comments.


A current theory of mine is that low bp can be at the root of some dizziness. Some meds have dizziness as a side effect. I also think it may not be just coincidence that many suffering dizzy spells are on aspirin or some other sort of anti coag medicine.

My opinion is that if anti coag meds can cause bruising on your body they can also cause it on the brain. I think that sometimes anti coag meds may be a little too effective and cause unwanted effects. But for all those on anti coags... they were prescribed for a reason.

Rock or hard place.

I dont remember having such dizzy spells before starting on blood thinners. A bit light headed but not the dizzyness. Or is it just a progression of the condition?


I was diagnosed with Scleroderma in 2007. In January I experienced extreme dizziness and nausea, along with deafness and tinnitus of the L) ear. I was diagnosed with autoimmune Meniere's Disease. If your ear function is affected that may be a possibility.


In my opinion, menieres disease is not a disease, but instead a reaction to something else that is occurring with your condition. If whatever is causing the symptoms usually attributed to 'menieres' are controlled or not allowed to occur it magically disappears. I am a patient, not a doctor though.


I also have dizzy spells and light headedness. I attribute my light headedness to lowing bp. It happens several times a month. It feels like my heart has stopped beating. What caught my eye was the ear problem. I have had the ringing in my ears for a LONG time. Some days it's tolerable, some days it's so loud I can barely hear people speaking to me. I have told several doctors about this. No one seems to think it's anything. I guess I can speak to the new set of Doctors about it.


I tend to agree that the low BP probably has a large bearing with this problem. I am interested that you mention ringing in the ears, I have problems with this on occasion. (Remember BBC closedown after national anthem?),It sounds like that.

Thank you for your input, it's good to air these things rather than be a prisoner of paranoia.


Are any of you with the dizzy spells on either warfain or aspirin?


Part of my meds are aspirin, but I have been experiencing dizziness for 2 years. It is particularly bad november to march. Apart from the fact extreme cold=extreme pain, I think SAD may be involved(or in my case sad donkey!).

During the winter I am very aware of anxiety/panic attacks especially in shops,on buses or anywhere that has a lot of people. Claustrophobia is a regular companion, and I need to get away from that environment.

Sorry, I believe I have started babbling! Thank you to you, and all the replies given by everyone.I appreciate it.


I get dizzy spells and I've high blood pressure..


Hi Jpmac, I think high and low bp are just as bad as each other, just opposites with the same kind of results. I have regular tests at hospital to check on blood oxygen levels. Hopefully a nebuliser will not be needed, but that is the purpose of tests.

I am just of the opinion that the cold has a direct link to dizziness....somehow.


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