Back Pain

[AEBURT88]

Has anyone had lower back pain problems. Not sure if it's related or not. Our hematologist here ( Cheyenne Wy ) told me there's nothing she can do for my APS and kept me at my normal doctor. I've had 3 clots, 3 miscarriages, I am overly tired all the time and I've had a back pain that will not go away

[MaryF Administrator]

Hi and welcome. Here is our charity website, which contains a list of specialists across the world: ghic.world/ It is really important that you see a doctor who fully understands this condition. Any good doctor would certainly look at your vitamin D, Folate, Ferritin and B12 levels plus other tests for inflammation etc etc. In my own case I was told my lower back pain, severe at times, was a mixture of my Lupus and also Psoriatic Arthropathy, I also have degenerative discs. The pain was worse when my vitamin D and B12 were lower. It is also much worse if for instance I am ill in bed, as I am a daily walker, which alleviates a lot of my pain. It is also important to check your Thyroid, as that causes dire fatigue if not treated. I enclose this paper for you to read: the-rheumatologist.org/arti...

If your pain is severe, please do keep on at your doctor for further investigations, scans etc.

Mary F

[HollyHeski Administrator]

As MaryF says, we need a specialist of APS to look after us, it's not for you & me to guess whether your back pain is related!

Even your normal doctor should help you, go back for help.

Are you on anticoagerants? If so, that could also restrict you on pain killers, if not, again maybe a specialist could guide you here?

Tiredness could relate to constant pain or there could be a deficiency in your bloods, get you doctor to check.

You shouldn't be suffering alone, I'm so sorry your in pain. Persevere with your doctor's.

[Lure2]

I understand you are on Warfarin...? What INR? I also see you live in England. If you are on anticoagulation for your APS you should have an APS-Specialist looking after you. Who did diagnose you? Your Hematologist?

Back-pain can have a lot of reasons. Tell us more and if you have had an MRI? Most important is that you are properly anticoagulated with this illness if you are on Warfarin.

Dr Cheyenne Wy is perhaps not knowledable of APS and other autoimmun illnesses as to your other symptoms than 3 clots. Autoimmun illnesses may go hand in hand and therefor important to have a Specialist who works with these issues daily.

Good Luck!

[Lure2]

Sorry i see you live in the US not England.

[KellyInTexas Administrator]

Hello, “ Cheyenne”,

I’m sorry to say I know absolutely nothing about Wyoming...

You may have to resort to a lot of pro active self care and and good interpersonal relationships.

Do you have a good GP by your side? Looks like this is going to be your key . So often it is.

The nurse and staff of your GP practice will be where it all starts . It’s a partnership to improving your health and making you, the very best version of yourself that you can be.

Our mission here is to help you do just that, as you have already experienced.

Mary has given you the , “ starter” websites along with recommended vitamin and mineral levels.

Do you also have lupus? Sjögren’s? A low thyroid? How about bringing a Rheumatoligist on board?

How far away is Cheyenne from your home town, or do you live in Cheyenne proper?

So what medication(s) are you actually on currently?

Is your GP ( hopefully an internist) managing your warfarin/ ( Coumadin)?

What’s you approximate age?

When were you diagnosed?

When did you first have symptoms?

Do you have a family history?

As you’ve likely studied now in the GHIC website, you understand the importance of these questions. Let’s get your GP to understand them also. He can get you to the right hematologist, and the right Rheumatoligist. Your GP’s job is to help facilitate this.

We don’t have quite enough information from yet to be able to help guide you with your quest about back pain.

1. Could fall under the expertise of Rheumatoligist. This is why I’m asking these questions.

Best wishes to you-

Kelly ( here with you in Texas- USA.)

[Wittycjt]

Who diagnosed your APS in the first place?