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Help for hubby...growing frustration...


I am hoping someone here can help - we have been to rheumatologists & our family doc several times, multiple blood tests, etc & have no answers. I am getting desperate & I can only imagine how my husband feels.

My husband has had roaming joint pain for maybe five years now. It will move from his left elbow to his right foot to his right middle finger without reason. This used to occur sporadically - maybe once a month to once every two months & last from a few hours to a few days. He was also extremely fatigued, napping every day after work & every weekend. He did seem to feel sick more than "the average person" as well with headaches & flu like symptoms often.

In the past two years it has gotten extremely worse. There have been virtually no breaks in the pain. Some days he can barely walk after getting out of bed. Let me say that he is fairly healthy, in his 40's & not remotely overweight (6 feet, 170 pounds). This now seems to be affecting not only his joints but also his tendons & fascia. He will have swelling above one of his knees (also red & warm), his finger will swell to almost twice it's size & occasionally he will be unable to bend his wrist or straighten his finger. The pain/swelling is still roaming - there seems to be no rhyme or reason to where it will show up.

He is still exhausted. It is hard for him to get up for work & he is down for a nap as soon as he gets home from work. It is not unusual for these naps to last through the night. He naps most of the weekend as well. He is also now in pain while he is sleeping/laying down. He will often moan during the night & last night I found him in the chair because it hurt too bad to lie down.

On the days that he does wake up feeling ok, it is usually short lived & he will be back in pain before the end of the day. His blood test have come back normal for the most part. He has been tested for Lyme disease a few times & it has been negative. The only thing that tested positive (once) was ANA. The rheumatologist however said that was inconclusive.

We've been less than pleased with the 2 rheumatologist we have seen - they seem to blow this off. Our GP has been great, but there doesn't seem to be much he can do other than refer us to a rheumatologist. It is very frustrating to see him in this much pain & not have a plan of action. He has almost given up on doctors. I just cannot imagine him having to suffer for the rest of his life.

There has got to be something that can be done, but we just have not been able to diagnose this. I am hoping that someone will recognize these symptoms & be able to give us their experience. If anyone has any suggestions or can shed any light on this, I would truly appreciate it.

Thank you so much!

  1. Hi momrums100! Thank you for sharing with us. I commend you for speaking so openly about what your husband is going through. I'm so sorry to hear you aren't getting the answers you're seeking. While we cannot provide medical advice here, I'm hoping others can chime in if they've had a similar experience. Have you or your husband spoken to your primary doctor about your frustration with both rheumatologists? I'm hoping he can point you both in the right direction or advise on how to handle. If not, your husband can always seek a second opinion through another GP. Again, I'm so sorry you're going through this, and that your husband is in so much pain. Please keep us updated on how he is doing and how you both move forward, if you'd like. We're here for you. Warmly, Alesandra ( Team)

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