getting odd pains ..

[Emfrenette]

ive only been diagnosed with reynauds/limited scleroderma(crest) and vertigo not much treatment just on cymbalta for pain. I've been getting pressure headaches head fullness ans whooshing in my head but no tinnitus was found. Also ive been having lots of leg issues and lower back pain on left side only . Legs feeling heavy and cramping waking me up and random pains different places in my legs that come and go . I know circulation is an issue but ive done so many tests everything always comes back neg and looks like im making things up to the doctor my worry is a blockages somewhere .. any advice would be great !

[Midgebite21]

Sorry to hear your struggling. It’s a very worrying time when your newly diagnosed.I have a secondary diagnosis of fibromyalgia (as well as reynauds and CREST, was diagnosed 19+ years ago). The fibromyalgia has accounted for most of my pain, muscle issues and weird symptoms. It’s a very multifaceted condition which lots of autoimmune suffers develop unfortunately. Has your doctor suggested this to you at all?For night cramps I take a magnesium supplement but you can also get a spray that you rub into your skin before bed. It really helps me. Also helps with sleep too.

As a practicing podiatrist I can tell you that it is unlikely you have a DVT (or other type of clot) as the pains associated with these wouldn’t come and go, or move around to different areas, so please try and not worry about that. Your circulation maybe compromised though due to the reynauds/crest so try and keep as warm as possible to keep the blood vessels open.

If your worrying about all this there quite possibly could be an element of stress which could be exacerbating symptoms especially headaches. Do you practice mindfulness or yoga. These have both helped me over the years especially when I’ve been experiencing a flare up of symptoms. Stress is not good for autoimmune disease so doing everything we can to bring it down is always good.

Hoping you get some answers soon.

[SBQ1971]

Hello Emfrenette, you do sound as if you are in a bad place at the moment. I was diagnosed with Raynaud's and CREST, abut 30 years ago, later Limited Scleroderma with overlap. Have always had pain and weakness in my muscles and joints and odd pains that come and go. I find walking particularly difficult these days as my muscles in my thighs and calves seem to tighten the further I walk particular if a slope of any kind is involved.

Also have occasional vertigo and long term Tinnitus and feeling of pressure in my head but I don't think that is anything to do with LSSc. I may be wrong, who knows with these things. I don't quite understand how you can be told that you don't have Tinnitus who else knows what is going on inside your head.. I recently had a head scan to see if there was a clinical reason for it, as there can be, which came back neg. but I still have Tinnitus.

Like Midgebite 21 I also have Fibromyalgia, but only diagnosed within the last year and I am pretty sure that that has been part of my problem all along, but was never suggested by my GP or local Consultants.

I have been taking methotrexate for 20 years now and also Hydroxychloroquine which keep me reasonably stable. I also use a magnesium spray at night which does help me too, but I had Covid fairly recently and that seems to have set me back a bit . I had a real flare after my last Covid jab - Moderna.

As Midgbite says, any sort of stress is not good for us and trying to keep calm and relaxed with any sort of gentle exercise or listening to music, or a gentle hobby that takes you away from yourself can be helpful, though I understand that is not possible for everyone.

Good Luck and best wishes

[Emfrenette in reply to SBQ1971]

Thanks for your reply . Im in a bit of a different level of diagnosis i guess living in canada things are not as advanced as UK . I do feel as though im in the dark abouy all my symptoms the doctors just keep saying less stress which i understand can cause more damage to worry . But everyday is something new or some type of worry or reminder that im not ok . I keep putting off calling my doctor for any new symptoms or concerns as all she says is : we did this test and im at a loss for what else we can do to help you . Im a mystery to her and its an annoyance to know more than my actual doctor im the one that is an advocate for my own body. For my tinitus i was set up to see an audiologist .that doctor told me right away knew it was something along the line of being more vascular issue . As other can hear the whooshing noise if my daughter puts her ear to mine she can hear my noise its quite odd . The magnesium spray works pretty good any kind you could suggest?

[SBQ1971]

Yes, that is odd, and because it goes in time with my pulse, I thought mine might be vascular, but it seems not. presumably your Raynauds, LS Sc was diagnosed by a specialist Rheumatologist if not you could ask your Dr. if you can see one.

I don't know what you can get in Canada, I use Better-You Magnesium Oil Goodnight spray, but I am sure there many others. We can get it over the counter at the Pharmacy.

I do hope you can get some relief. Take care

[Lilicpixiedust76]

I have a lot of what you have. I can’t help with the head whooshing as right now I’m dealing with major tingling almost constantly in head and I get a lot of those weird sensations but one thing get all your vitamin levels checked I know it sounds a simple thing but I had the walking on pebbles/legos walking on water or wet cement with horrible leg pain and restless leg syndrome as well I was on recoup. My vitamin D, iron,A and B was dangerously low after they balanced those vits out I have had no problems with any of that other than knees but that is arthritis from my weight. I do a lot of swimming now

[Emfrenette in reply to Lilicpixiedust76]

I will check into this thank you ! I know ive put on some weight with all the different meds ive been put on for different reason . So it could be the cause also

[Halfwayuphill]

Hi Emfrenette, I take a magnesium supplement in a powder form. I used to use the spray but find the powder better. It really has helped with my restless legs and slightly my constipation. Incidentally, I have had UCTD for years but recently my Rheumatologist has said I have limited Scleroderma (Systemic Sclerosis) gut issues because I have major gut problems. They are waivering about a full diagnosis as my skin has not worsened. My pain darting everywear has got a lot worse and I mentioned I thought I had Fibromyalgia but he said fibromyalgia is a diagnosis for when they don’t know what’s causing it. Scleroderma in itself causes pain. Regarding headaches, I suffered terribly with migraine headaches for years but taking Amlodipine for Raynauds has stopped them. I think this may have been aLupus symptom though. I’m also very deaf and I don’t think that’s unusual with these conditions. I can let you know the make of magnesium if you message me. Hope you get some relief from the headaches.