Secondary Raynaud's?: Hello, I'm new... - Fibromyalgia Acti...

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Secondary Raynaud's?

painB4painafter profile image
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Hello, I'm new here and was wondering if anyone else with fibromyalgia has been diagnosed with secondary Raynaud's, if so do your fingers swell when you are exposed to cool weather after your body warms up while walking? I went for a 5 mile walk today and before I could get back home my fingers were so tight and swollen I actually thought they were going to burst. I had good circulation by then; my fingertips were red and sweaty, it's a good thing I was close to home.

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painB4painafter
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hi i have poor circulation and get cold hands and feet even in the summer i have now been told i have got carpal tunnel but when i was 16 i had raynauds phenonenum and i went oon a clinical trial where i had to keep a diaty for a month via yhe doctor and had to take g glass vial filled with clear liquid you snapped off the top and drank the liquid it did nothing to me but i think i was on the placibo ones as they did not tell you what onees you were on love to you diddle x

squidley profile image
squidley in reply to

Diddle I had carpal tunnel in both hands a number of years ago but thankfully after operations on both hands except for raynauds both hands are now not bad. Did your gp not suggest operating? squidley

painB4painafter profile image
painB4painafter in reply to

I'm constantly looking for clinical trials when it comes to the fibro and the Raynaud's. I'm looking for hope and help even if it's just a glimmer.

patient.co.uk/health/Raynau...

Hiya, welcome to the group.

I don't know if this link has worked, just learning how to do them :) but there seems to be some good info on it. Have you googled Reynauds? It sounds awful. Hope you can get it sorted with your GP?

A 5 mile walk?!?! I'm so jealous! lol

Sue

painB4painafter profile image
painB4painafter in reply to

I try to get in an adequate amount of exercise at times even when I'm feeling my worst I just want to feel like I'm getting something accomplished for myself and sometimes walking is it for me and sometimes I pay a high price for some of those brisk, long walks.

I just cliked on the link and it said page not found, sorry.

If you google secondary raynauds or even just raynauds, you will see a lot of pages you can have a look at.

Sue

painB4painafter profile image
painB4painafter

Thank you Sue! I have gathered so much information and I realize that my Raynaud's is not a primary thing, although I wish that it were. It's extremely painful and bothersome.

Gailbt profile image
Gailbt

I have had Raynauds since I was 19 which then caused me to get Rheumatoid Arthritis when I was 27 and have had Fibro since I was 43.

painB4painafter profile image
painB4painafter in reply to Gailbt

Thank you for sharing your diagnostic experience although, I am sorry to read that you have a dramatic chain of chronic ailments. Life can be extremely painful. Have you ever had your Raynaud's to swell your fingers to such an unbelievably uncomfortable extent?! I can leave my house and my fingers and toes will be blue but as my body warms up and circulation gets better my hands and fingers get beet red, become hot and swell to the point of me not knowing if they are going to actually burst open, this is relieved when I get home and rest but then my hands, fingers and toes go right back to being icy cold and become stiff and achy. I was tried on different meds for my fibro, unfortunately, they made my symptoms worse and exaggerated them more so I'm currently suffering but looking for clinical trials every day.

painB4painafter profile image
painB4painafter

Hello Chris and thank you!

Gailbt profile image
Gailbt

My fingers and feet swell beyond recogonition at times, can't get my rings off or wear certain shoes! Unfortunately my Raynauds was brought on due to a medication I was on for Basilar migraines, I complained that I was freezing cold to the point I was in severe pain! Doctor just shrugged her shoulders and said it was a side affect. Changed doctors a few years later and told him about feeling so cold, after much tests he said I had Raynauds and sent me to the hospital and that's where they tried different meds but none helped. During my visits to hospital it was discovered I also had rheumatoid and further blood tests shown had an under active thyroid. I tend to refuse meds, after all, it was meds that started the chain of events in the 1st place! Have had to admit defeat though and am now on Amitriptyline for FM and Tramadol for arthritis. In a lot of pain at the moment and feel like my body is a dead weight but have to keep going as I'm a full time carer for my disabled Mum. x

painB4painafter profile image
painB4painafter in reply to Gailbt

We have a lot in common. I too am my mother's sole caregiver, she isn't totally disabled but she's got osteoarthritis among other things. Again, I'm sorry about your chronic ailments but I know what you deal with. It's amazing how much we can have in common with people we don't even know. Hang in there! Thank you for sharing you experience especially with concerning Raynaud's.

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