My personal battle with lack of diagnosis

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New Member

Date Joined Feb 2017
Total Posts : 4
   Posted 2/23/2017 10:44 AM (GMT -7)   
August 2016 my right arm swelled up to three times the normal size, my fingers were crippled, this all happened on my right side, I was throwing up and just could not move. This happened to me very quickly on August 16, and I was found by my son. He took me to ER and I was admitted for cellulitis and a staph infection. I was treated for the pain and lots of antibiotics, had plenty of tests, they did find that I had a stroke in the cerebellum region, which the doctor said was old. I think I had a silent one in April 2016; however, I could not move my right hand at all or any of my fingers; saw 17 doctors and was given 3 dxs, which none where right. after spending 13 days in the hospital the only improvement was the swelling had gone down on the right hand, the pain was so awful going down my arm into the hand and fingers. It took me seeking out doctors on my own who told me that the problem was not coming from the neck, which they thought, 2 neurosurgeons told me it was in the arm. I went to a hand doctor who dx me right away with CRPS, sent me to a pain dr. who said the same thing. I was given 2 nerve blocks which really helped the pain coming from my upper arm down to my wrist. Now he wants to put a stimulator in my back, which I am not convinced will help me move my fingers, I am doing OT therapy, use procardia ointment on my hand and can move my fingers some. I just went to my hand dr. who now thinks i am dealing more with RA and Raynaud's. I have been dx. with severe osteoarthritis in my fingers which have nodules all over them. I have had right hip replacement since I was bone on bone from good ole arthur. He has referred me to an RA doctor which I am waiting on a phone call for that, so to say the least i am confused. My right hand and fingers stay so cold, swollen and painful. So this has been gong on for 6 months.

Meds:Cymbalta 60mg
Neurotin 1800mg
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Date Joined Feb 2003
Total Posts : 15310
   Posted 2/23/2017 7:46 PM (GMT -7)   
Hello littlemary & welcome to the forum. From reading your post you have truly been put through the ringer the past few years. More often than not, sometimes we just have to do our own searching to find a dr that will listen to us & not just talk to make noise. So very glad to read you seem to be on the right track.

If this were me, I would not be in any rush to do anything until I saw the rheumatologist. I would let him/her run whatever test is necessary to try to get everything diagnosed properly once & for all.

As far as the stimulator goes take your time & do research about it so you can make a well informed decision. A lot of the people that has come through here said it didn't help & wished they had never agreed to it. A few said it did help, mainly these were people with low back problems. Above all do not let a dr force you into having one unless that is what you want.

If it looks like you are leaning towards having one put in, come here & we can give you some pointers to ask about the device. They can be very expensive to maintain later on down the road & many times insurance will not pay for these tuneups & they are not cheap. Something else to keep in mind, if you have a problem with one, your PM dr will not know what to do, he will tell you contact your rep from the company.

I hope you can get some help with the rheumatologist. Take care.
Moderator in Chronic Pain & Psoriasis Forums

Lessa Rayne
Regular Member

Date Joined Feb 2017
Total Posts : 21
   Posted 2/24/2017 1:51 PM (GMT -7)   
Littlemary, I'm so sorry you are going through this. Like you I have no diagnosis and am waiting and in limbo so I truly know how frustrating it is to be in pain with no real "reason" (not to say it's not valid or even not there, I know it is). This forum has lots of friendly people and they are wonderful and supportive.

It's so frustrating to get told oh we thing it is x, and then the next doctor tell you no it isn't and it might be y illness instead. Going to the Rheumatologist is a good idea I know I've moaned and groaned about going to a new doctor and had negative thoughts (such as: they're just gonna say it's whatever, or that it's not this, or that they can't help me why bother?).

I hope that the Rheumatologist can help you, and I'm so sorry they think it's CRPS, I too am bouncing around on that possibility with no confirmation. Take care of yourself and remember that it's okay to be frustrated, a little angry, or emotional. Take it one day at a time and keep positive.
Undiagnosed chronic peripheral neuropathy
Cymbalta 90mg, Effexor 150mg, Adderall 40mg, Trazodone 100mg, Amlodipine 5mg, Vitamin B12, C, D3, magnesium, cranberry pills, multivitamin

New Member

Date Joined Feb 2017
Total Posts : 4
   Posted 2/24/2017 3:06 PM (GMT -7)   
Straydog, I am not going to get a stimulator, I feel the dr is just trying to sell it to me for whatever reason. My research has told me it works for some with back issues and helps them walk. A good friend of mine had one put in and know she is having it removed cause she says it has only made things worse. Another friend of mine did the 6 day trail and he said he said he saw no difference. The thing is me fingers can move, not a lot, one does not move at all. They, the fingers, wrist and hand are extrememly painful with nodules on them which I believe is from the osteoarities which I was dx with about 5 years ago. I did get an appt with the rheumotolgist for next Weds. thank you God cause I believe my orthopedic is on the right track. I am a retired RN so no dr. can get past me without me being assertive. He also thinks I am dealing with Raynauds disease which I was dx with that many years ago. So I am thinking I am dealing with severe OA, a flare up of RA, Raynauds and maybe some CRPS. My hand is not clubbed over, I can open doors, hold a few things, make a small fist, all super painful. I try to redirect the pain cause it does go up halfway on my arm. Its a good thing a knew what I did not have such as osteomylitis, transverse myletis, and that it was all coming from the neck and I needed surgery, man, I think where I would be if I had listened to those doctors. The propably would have killed me. I do have blisters that just appear on my fingers for reasons unknown. I do get frustrated cause I love playing in my flower bed, but learning to shovel in my planters to plant my flowers. I do make a mess but that is just ok. Thanks for writing and I am keeping the faith that an answer will come March 1. Until next time.....littlemary

New Member

Date Joined Feb 2017
Total Posts : 4
   Posted 2/24/2017 3:27 PM (GMT -7)   
Lessa, sorry you are going through you own troubles. I saw 17 doctors in the hospital, then went to 4 on my own after leaving with 3 dx, finally went to an orthopedic dr who dx. me with CRPS. Sent me to a pain specialist who dx. the same thing, I was much worse 6 months ago, those doctors would have probably killed me. I do believe my orthopedic dr is on the right track. I have severe OA anyway and he thinks I am dealing with Raynauds and a flare up of RA. I believe he has a point so I am going to the rheumotolgist March 1. I hope to get some answers cause my fingers are cold, swollen, have nodules, blisters appear on them, no one knows why, but I do have some movement in my fingers, the pain is from the mid arm, into the wrist, hand and fingers. Pain is subjective so no one can tell you if you are in pain or not. Sory you have no dx. pray for direction and you will be guided to the right dr, I will pray for you so you get the help you need. Thanks for the reply.....littlemary
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