Throbbing pains

[Lisamoule1985]

Since being diagnosed with Hughes syndrome I have noticed chronic throbbing pains in legs and arms! It's just awful and don't know what to take that may help. Any advice would be great?? As well as this I suffer with terrible fatigue and brain fog and really struggle at times again any ideas on coping strategies would help me massively! Thanks in advance xx

[MaryF Administrator]

Hi are you under one of our recommended specialists? Or just your GP? As well as keeping an eye on the actual condition, it is crucial to be on the right medication, some do very well on Plaquenil. Also you need to take into account that the trio of disease so often mentioned in is Hughes Syndrome/APS, Sjogrens and a Thyroid issue. It is really important that you look at your Thryoid and Sjogrens and don't get fobbed off with 'FIbro'.... also your level of vitamin B12 D, and Iron. If any of these are not quite right you will feel considerably worse. Your GP can look at any of these for you. MaryF

[Ylmom]

So sorry for your pain. I experience this also. Some days are good and some days are painful. But it is always there. My blood thinner has helped for sure but didn't take it all away. I feel there are also triggers. Alot of stress seems to make mine worse. Are you on blood thinner now?

[Ylmom]

I agree. I can tell when I do about 20 minutes of light walking on a regular basis it helps. Regular being the key word😉 I have to make myself.

[LauraKlumpp]

Same here. If I miss a couple days of walking, the pain gets worse. I do not run only walk.

[jetjetjet]

I am having the same problems and i have been being treated since 2009 - i go to Pain care -- therapy now pain in both arms , legs total back is a mess and i get shots every month for that back trouble. -- Therapist wanted cervical spine MRI done -- now Dc's are going to Rota cuff's with contrast starting tomorrow for one shoulder and next Tues for the other -- i don't know why they are going this route with the shoulders when my Therapist whom has been treating me all along Say's it should be the spine . But we will see what happens and if you are interested i will post it , if you would like .

[Lisamoule1985]

Thanks all that have replied! Means so much to me as this is all new to me. I have recently seen a haematologist who told me he wouldn't treat me with blood thinners unless I'm pregnant even with my symptoms due to never having a clot before. This worries me to be honest. I am going to docs to ask for further tests for thyroid etc in two weeks and also going to ask for referral to rheumatologist who is on the list! Maybe get a little further xx

[Lure2]

You could perhaps try baby-Aspirin (75 - 100 mg) together with your dinner and see if you feel better on it.

Also look for an Expert!

Best wishes from Kerstin in Stockholm