Joint Pain, Any One Else?

[Darlene]

Pots doesn't cause joint pain does it? My lower back, neck, left hip, right thumb, Left 1st toe, and my right baby toe. The pain in my lower back, and left hip are severe. I also have muscle pain. Somedays I can hardly take it.

[scarfgirl]

Oh yeah. ALL my joints hurt. Muscle pain seems to be limited to my upper back, shoulders, and neck.

[flop]

POTS can cause muscular pain in the neck, shoulders and upper back through the "coat-hanger pain" effect (search the forum for more information as this has been posted on recently).

There does seem to be an association between POTS and Ehlers-Danlos Syndrome (EDS), particularly the Hpermobility (type III) form. It is thought that POTS may be secondary to EDS for some people so it may be worth asking for an opinion form a rheumatologist with knowledge in EDS.

Another factor is that muscular and joint pains are a common complaint in the general population and are generally worse in those who don't exercise. Chronic illness often limits our ability to exercise / keep joints moving properly and this can contribute significantly to pain.

I hope you are able to get some answers and relief soon,

Flop

[mkoven]

Just a followup to Flop, many rheumatologists have little experience with eds. They'er more used to people who are stiff, rather than hypermobile. I was diagnosed by a geneticist and by someone in sports medicine.

[flop]

Thanks mkoven - that is why I specified a rheumatologist with an interest in EDS. Officially rheumatologists specialise in connective tissue and auto-immune disorders (so should be able to deal with Lupus, Marfans, EDS as well as their different arthritis patients).

In the UK the top experts on EDS are Prof Grahame in London and Prof Bird in Leeds, they are both rheumatologists.

Things must be different in the UK to the USA. Here you only go to see a geneticist once it is known that you have (or carry) a genetic defect. The geneticist advises on issues such as the chance of passing on the defect to future children and screening other family members. They would only be involved in diagnosis of a genetic condition if it was clear that a child had some type of genetic syndrome but it didn't fit clearly with any pattern that a paediatrician could diagnose.

Flop

[valliali]

This is an interesting topic. I have been wondering about my joint pain as well.

About four months after I started getting sick, the fingers on my right hand swelled up at the joints. Really swollen. Then I developed this nodule on one of the fingers, it was a very red lump under the skin that hurt like heck if so much a gust of wind touched it!! Then the swelling and the nodule on that hand went away, and it went over to the left hand. Developed the same little painful nodule. Than a couple months later, that went away too. Now my joints in my hands are achy and stiff, and sometimes swollen in the mornings, but I have noticed that my right hand fingers are curling inwards. Also, a couple of months ago, I started developing really severe hip pain. Not sure if it is joint related or not.

I have no family history of arthritis, my RA factor was normal, and I am in my early twenties, so developing arthritis aside from whatever is going on seems very unlikely to me. I am not sure that this is arthritis, but I do find the migrating swelling and that little nodule to be very unusual.

So I am wondering, when you guys experience joint pain, do you also experience swelling? Is this caused by POTS?

[delphicdragon]

Seems one or more of my joints is always in pain.

Let's see today it's the left wrist and ring finger, lower back, right hip and left big toe.

I know this is Ehlers-Danlos (EDS) for me, and it's something you should look into, especially if you are hyperflexible. Need to stretch my back to put that vertebra back in and do some adjusting to the toe. Should be ok for a while and then I'll move and something else will go out. Such is my life. Unfortunately, I've found, and with talking to other EDS patients that there really aren't any painkillers that cut this pain. It's there for a reason. The joint IS dislocated. I've found there is little or no swelling associated with this pain, other than the obvious, "well that doesn't look right." I don't swell up at ALL. Have had numerous broken bones all with NO swelling, but my ankles swell when I stand up - go figure.

Sara