Side effect? They say No to FSS, frightened

sweetp6217

Today is 01/01/20 and I was "fine" 4 days ago. Then, two fingers swelled up, one after the other on different hands. 3 days ago, the arms wouldn't behave properly and the pain began in the shoulders; yes, both of them. I went to my pcp's office but she wasn't in town. Her partner/replacement thinks it may be FFS (Frozen Shoulder Syndrome). Never heard of it. By that time, the pain, numbness and lack of movement had progressed to the hands. I tried two Aleve and it did nothing for me. Then I tried XS Tylenol, didn't do much good. I'm supposed to go in for an MRI for the neck/spine area.

By the way, 3 days ago, my left arm was practically useless; not entirely. Today, my left arm and hand are much better, but now the right hand is acting up, pins and needles, numbness, carpal tunnel symptoms. The hands are also swollen, mostly the right one now. Since yesterday morning, I've been taking Tylenol Arthritis and it seems to be working for the pain. Now, I think I have to wait for my PCP to get back so that I can get on a proper anti-inflamatory.

Argggh, I've used my hands to much typing, time to stop. Thoughts all?

MinusTwo

Sounds like an X-ray is important & something is pressing on your nerves. Numbness is NOT good. For frozen shoulder I was sent to an orthopedic doc.

Have you also considered lymphadema? It can come on any time up to 20 years out even with just a sentinel node biopsy. I would also call my BS or MO or RO and insist on a consult with a trained & certified LE therapist. You can get more information at the link below.

https://www.stepup-speakout.org/

rockymountaingirl

Frozen shoulder in medical-speak is "adhesive capsulitis." It would account for pain and stiffness -- to the point of limiting motion -- but I don't think it causes numbness typically and it would be unusual for it to occur in both arms at the same time. (I've had it myself. One arm was plenty.) I agree with MinusTwo, it sounds like you need more investigation.

sweetp6217

It gets a tad more mysterious. My shoulders don't hurt now. Last night, I was planning on taking my 650mg x 2 tylenol at about 10:30 PM but decided not to. I woke up and felt as if I had taken a tumble down a grassy knoll. Little aches in further places (knees in particular). The hands are less swollen despite the fact that I've tried to be active today. I did slow it down a bit, but no pain. What I can't do is lift something heavier than a gallon of milk or reach and grab something not quite as heavy above head height. The left arm can make it up all the way now, but slowly. Like the muscles have seen better days. My hand writing looks really sloppy now too.

I just don't understand why they can't get me in any sooner for an MRI. It's more than a week away.

Thank you minustwo & rockymountaingirl

AliceBastable

Did you have to stretch your arms over your head for radiation? Mine was over in December 2018, and I still get intermittent shoulder and arm problems from it.

sweetp6217

AliceB: Yes. The rads were done February to April of 2018 so it's been a long while. At the time, I used to go to work right after and luckily didn't suffer from it. Light side effects were taken care of by miaderm and lack of bras. The last thing that I did on the day the shoulders started hurting was a chest x-ray. One of the images required that I put both arms up (standing position) to hold onto a bar for a few seconds while I held my breath. Of course, my husband responded, "that must have been the reason". He's a jokester.

P.S. Sorry for your problems. That bites.

ShetlandPony

I can’t begin to guess what is going on here. But if it were me, I would go see a neurologist immediately.

AliceBastable

Actually, your husband might be right - you could have pinched a nerve in your upper back from that stretch position.

MinusTwo

Whatever the cause - numbness should never be ignored. Please do go see a neurologist.

sweetp6217

You all are really sweet. Unfortunately, then same cannot be said about neurologists. Sure, they are busy, but April? By then, maybe a coffin.

MinusTwo

Sweetpea - can you get your PCP or your MO to run interference and get you in earlier?

ShetlandPony

Goodness, sweetp, to expect you to wait until April is ridiculous. Two ideas come to mind. You could call your insurance company and tell them it is in their interest and yours to get you in to see a neurologist now. Or you could go to the emergency room where a doctor will have to see you. Try to go to a university-based facility. Maybe others will have more ideas.

sweetp6217

I'll give my MO a try, thank you! Reminds me of when I first discovered my lump. Couldn't get in for the biopsy for direction of treatment for over 3 weeks. Then the wait to begin chemo. 52 days from me to chemo.

sweetp6217

I wonder if my neurologist read this thread. There was an appointment or two for tomorrow that suddenly showed up that weren't there earlier in the week. One less thing to hopefully worry about.

ShetlandPony

I’m so glad you can get a timely appointment, sweetp. Maybe the doctor looked over the new appointments and said no no, I want to see this person this week. Please do let us know what the neurologist says.

sweetp6217

OK all, my neurologist doesn't believe that it's neurological. Injury or other health issue to be sure. I'm relieved that he did a pretty good exam (although a bit late, less pain, etc.). Also, he ordered a full battery of blood tests that took up 4 vials. Should find out all the results by the end of the week. If they find something, I'll be surprised. I haven't had a bad blood test since my last big chemo infusion that had to be postponed by a week (anemia). Thanks for the positive thoughts. It means so much to me.

P.S. There are a few threads, some on this website that mention going to a chiropractor, orthopedic doctor, PT, etc. I did get adjustments for my lower back, in the past, but I thought that it didn't really help me (hard and soft touch).

ShetlandPony

Ok, good, it sounds like the neurologist was thorough and you can set aside some worries there. Keep pursuing help with the appropriate specialists. Thanks for letting us know.

MinusTwo

sweetpea - Maybe I missed it, but I still think it would be worth getting a series of neck & spinal images.

sweetp6217

Thanks MinusTwo, my neurologist said to go ahead with the images, regardless of blood test results.

godisone

If the condition is not improving you should visit a doctor for the right guidance till then yiu can use warm compression which might help with the movemnt and reduce swelling of the arms and the fingers.

sweetp6217

Thank you godisone. the pain is all but gone and I had that MRI. I will try warm compression if it should return. The verdict has not been reached yet since it is the weekend.

Thank you all and be well

sweetp6217

Update:

Thank you all. The MRI was a bit inconclusive except for signs of arthritis. The MRI only focused on the neck, BTW. I went for follow up visits and they are still puzzled. My current problem is numbness in the hands/wrists daily (to varying degrees), Also, pain or cramps in various parts of the body (mainly shoulder(s), hands, feet, lower back and hip. I also still have a strange itchiness on my back that is right in line with my rads that finished in April of 2018. There is also seldom discomfort in that same spot which my hubbie can rub out with a warm hand.

I will mention all of this to my MO, but I am not expecting a well thought out response. I have had two MOs and both are or have poo pood symptoms of letrozole. In fact, I had to practically kick and scream to get the first MO to remove Perjeta due to my horrible side effects. (Didn't want to lose the house by not working and the percentage with Perjeta was negligible). My previous/worst symptoms almost match PsA or SE of letrozole. Next may be a hand x-ray and finding a Rheumatologist.

I've also had to appeal claims for the MRI. Insurance doesn't want to pay it and the HCPs are passing the buck around. Figures.

02/06/2020: I spoke with the billing department and they say that they already began the claim appeal process. Will see my MO in a couple of weeks. Will try to lay out all of the symptoms, etc.