PAIN : For the couple of months and... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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PAIN

teadonna profile image
4 Replies

For the couple of months and getting worse I am in so much pain, just below the elbow, my back and also in legs (Knees I have had knee replacement done in both) but its like the muscle in my thigh, I have been taken co - codimol but there are doing nothing, I was taking Iburofen as was on them for years. but being on warfarin they did not really like me taking them. Not sure if the cold weather is making it worser. I know if I go to my doctors they will say wait and till you see your consultant, I am u der the neurologist at my local hospital and under Prof deCruz but my appointments are not till march 2019. This is getting my down, I am still working even thou sometimes am in agony. can anyone suggest any help, then I can book an appointment with doctor and see him with some suggestions.

Thanks

Donna

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teadonna
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HollyHeski profile image
HollyHeskiAdministrator

So sorry you are in pain, understand your reluctance to see your GP but you shouldn't suffer in silence?

It also may be worth contacting Prof D'Cruz's secretary to see if you can get an urgent earlier appointment or a recommended drug to help in the interim?

MaryF profile image
MaryFAdministrator

Hi, I know I usually mention this, but have you recently checked your levels of vitamin D, also Folate, Ferritin and B12 and have you considered ordering a private Thyroid panel? I had to as I was always told I was fine, (they only do the TSH), and sometimes a couple of other tests), It was the best money I ever spent as the lIve B12 test showed I was short of that, my D was already good, as I was supplementing, however my Thyroid showed up with bells on, I was always very suspicious of a 'Fibro' Diagnosis. Also the private B12 test I did was more accurate than the NHS vesion.

So doing this and treating my Thyroid and also eliminating gluten from my diet and adding in various supplements, (all checked by a professional), and any medical doctors involved in my care, improved things immensely. MaryF

Fra22-57 profile image
Fra22-57

I think you could try calling on the nurse help line for Professor D Cruz clinic. I have done that and they have been extremely helpful and given me an earlier appointment. Don't struggle on as it can wear you down and worry stresses us out

teadonna profile image
teadonna

I did have a thyroid test done about 9 months ago and my GP wanted it re-done in 3 months, then again 3 months later, now have to have another one done in February, don't know why he want them done every 3 month going to see what happened after the is one and ask him why i am having them redone as often. but thanks everyone for you opinion, I may give the nurse a call and see what they say.

Donna

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