Leg issues

[5678sar]

I have not yet been diagnosed and I am waiting on the results of my blood test results. Over the last week or so I have developed a new symptom - my legs are incredibly tired and achey, even just going upstairs is extremely tiring. I am fit and healthy so normally would be very active but this makes me feel like I just want to lie down all day. My circulation is bad, It always has been but it’s worse at the moment, I have freezing cold feet however when I drink alcohol my feet burn and turn red. I also have tingling and pins and needles in both legs. Should this be something to worry about? Is there anything I can do to improve this whilst I wait for my test results?

[HollyHeski Administrator]

Hi, first thing came to mind for low vitamin B12? Presume you are being tested for various problems.

I can advise you to seek medical opinion for any new symptoms as only your GP can look and tests for things.

Give them a call in the morning to discuss and go through with them.

[5678sar in reply to HollyHeski]

Thank you for your response. I had b12 checked a few years ago when my weird symptoms first started and it was fine but I maybe need to get it checked again.

[MaryF Administrator]

Hi, make sure your GP is thorough, it is important to look at your B12, Folate, Ferritin, D and Thyroid levels, as it is not unusual to have Thyroid problems, unfortunately usually only the TSH is done, which for a lot of people is not thorough enough. See what comes back first, and if you are not satisfied, you may want to order your own detailed private tests.

This is a good read: the-rheumatologist.org/arti...

If you tell us here you are located, we may be able to help with a list of Hughes Syndrome/APS Specialists, to help your GP.

MaryF

[5678sar in reply to MaryF]

Thank you Mary, yes I have Hashimoto’s thyroiditis which was discovered a couple of years ago. I will check which vitamins etc they also checked. I have the list of specialists from you already, thank you

[MaryF Administrator in reply to 5678sar]

If you are on Levo Thyroxine if you do decide to do the order yourself private tests, you would have to also consider a Reverse T3 test as well as the antibodies, to see you you are responding and utilising your medication. I hope they are looking after you well. It is surprising how many people are not converting their mono T4 Levo very well, some get lucky and get Liothyronine added in which is synthetic T3 others sometimes manage to get Natural Desiccated Thyroid on a named patient basis only, it is all a bit tricky, best of luck. MaryF

[5678sar in reply to MaryF]

Thank you Mary, Yes I take 125mg levo each day. I regularly have my T3 tested but have never had reverse T3. I will look into that, thank you.

[WendyWoo50]

Hi, I get that too, in fact it is one of the worst APS symptoms for me. My legs are tired and achey all day but get worse in the evening. They are worse when my INR is too low or too high. How is your INR when your legs are worse?

I assume this is a common symptom?

Please check the bloods that have been suggested. Good luck x

[5678sar in reply to WendyWoo50]

Thank you for the message. I don’t know what my INR is. I have only just been tested for APS Due to miscarriages. I am waiting for my results.

[veganworld]

Hi

I also get this. I have been diagnosed with APS.

When I get what I call a flare its like trying to walk through heavy mud or treacle. It does pass with rest and for me tends to come on if I have over exerted myself. If you end up on warfarin it does improve it but I do still have to be careful not to bring on a flare. Drinking more water helps a little so you could try that for now. Sorry to read you have had miscarriages. Hope they get you sorted soon.

Kaz x

[5678sar in reply to veganworld]

Thank you for your message! I definitely over exerted myself before this “flare” started. We are renovating a house So I was shattered and then we celebrated seeing some friends in the evening and I drank way too much. I think the tiring renovations and also getting dehydrated from alcohol sparked this. It is feeling slightly better each day now that I am resting and drinking loads of water.

[veganworld in reply to 5678sar]

Glad you are feeling better. There are various ways to manage the flares and you will get good at it and can renovate and celebrate and get on with your life. Rest diet water and various medications can all help. Life is still good with this for a lot of us although there are people who really do struggle but often those people do have to manage a variety of other things thrown into the mix. It is frustrating when you get a flare up and healthy friends do not but always know it will pass.

Good luck

Kaz x