I have a few of your symptoms but I'm not sure they are related or have the same cause.

*Wake up and both hands are completely “asleep”, nasty pins and needles when I move them - I have polymyalgia rheumatica (PMR) which my rheumatologist explained is arthritis all over the body. Because I am a side sleeper this happens to me when my PMR is active and I'm not on prednisone or I'm trying to taper off of prednisone which I'm trying to do now. The doctor told me that the inflammation puts pressure on the nerves and that causes the tingling, pins and needles feeling. My PMR was in remission for 6 years but came out of remission last year in August and I was put on 20 mg of prednisone. Now I'm fighting a running battle trying to taper off the prednisone to see if the PMR will go back into remission...may never happen but I'll just have to adjust and it will be my new normal.

*Weight gain - I have had a minor weight gain which I associate with the prednisone. The only way I can stay in control is to stay on top of my diet. Found these words of wisdom in another forum - DIET: Every time you eat or drink, You are either feeding disease
or You are fighting it. The choice is Yours.

*Fatigue - So much to do, so little time - I think this one is on me to change and get more sleep while balancing what I need to get done.

*High blood pressure - have had this since my late 30s (now 74). Have taken several different medications which were changed in my late 40s after participating in a Mayo Clinic heart study and my diagnosis changed to hypertension causing the high blood pressure or something like that. Before that I was on lisonpril which is what I personally think caused my peripheral neuropathy or at least made it worse but it's just my opinion based on my own research into the drugs I have taken. I'm now on spironolactone and hydrachlorathyazide for the high blood pressure.

*vision problems - I'm still working on this one. I'm not sure if it's just a sign of getting older. I do have the start of cataracts according to my last 2 eye appointments which I get every year. I got new glasses several months ago but they don't seem to help much.

It might help if you can prioritize your symptoms to something like major and minor ones for your doctor so that what's really important is addressed by your doctor. I think it's really a good idea what you've done to make a list of all your symptoms and look for a common cause or see if a group of the symptoms point to a specific health issue. If you like to do your own research, I would recommend using Google Scholar (https://scholar.google.com/). Mainly because it will let you sort the results so you see the newest information/links at the top by clicking on the year link at the left of the results.

Hopefully some others will join the discussion with what is working for them.

John

@johnbishop

Hi John,

Thank you! I really appreciate your response. As to why the doctors here aren't taking me seriously, I think it's a combination of things. I get a sense that much of it stems from the culture here. I've gotten the clear message that I'm no more important than the next patient - in fact, one doctor blatantly said that. It's just widely known and accepted that wait times for an appt with a specialist or for tests like MRIs are commonly 3-6 months. I've noticed that across the board, doctors don't take a thorough patient medical history, family history, only on rare occasions or if you request it do they take vitals - BP, heart rate, temperature, height, weight, etc, and physical exams are either non-existent or cursory. They just have a completely different approach to medicine.

Prior to January 2016, I wasn't taking any medications, not even vitamins. In April 2017, a doctor rx'ed Tramadol for pain control and I've taken it nearly continuously since then, first with liquid drops (though I was taking 1/4 of the daily amount he rx'ed so it lasted much longer). In June, my GP rx'ed long-lasting Tramadol oral tablets instead to be taken twice a day. I'm currently taking them once in the morning, 50 mg tablets. I honestly am not sure I could function without them, which sucks. Other than that, I'm only taking 20000 units of Dekristol (Vit D) every 2 weeks. My vit D was at about half what it should be back in March, when I started taking it. My levels are now finally back to normal as of this week.

I did check the symptom checker on the Mayo site. I've been on there so many times! It really is a good resource, but unfortunately it doesn't allow searching by lab results. If only I could put in my results for ANas, iron, Complement C3c...those kinds of things. Unless there's a way to do that that I maybe missed?? I'm afraid I really just need a good doctor.

@johnbishop

John, I'm sorry to hear about your PMR. Nerve symptoms are just horrid. It's its own weird beast. Luckily the left-side nerve symptoms that were so bad for me a few months ago have improved, likely also due to prednisone. Some of the symptoms worsened again after I stopped it, but they're manageable. Do you or your doctors know why your PMR came out of remission? And is there no way they can control the inflammatory process except corticosteroids? Have you tried plasmaphoresis, or is that an option?

I wrote down the quote you shared and taped it to my fridge: "Every time you eat or drink, You are either feeding disease
or You are fighting it. The choice is Yours." I like that. It's so hard to say no to my disease when it's screaming for chocolate. Ugh.

You said it perfectly with regards to the fatigue. Even most of the time when I'm awake, I'm not really with it, ya know? I feel like a zombie.

Ok, you lost me on the hypertension causing the high BP. I thought they were the same thing?

I did prioritize my symptoms and usually only share the 5 or 6 worst ones with the doctors. I made the mistake of trying to explain everything at my first couple of appt and I swear their eyes actually glazed over. I've been having memory problems and have been in so much pain at appts, which makes it hard to communicate coherently, I finally started asking my husband to come with me to appts. He's not a medical doctor but has a PhD in science and is insanely logical. It's been really helpful having him there, in part just because he now understands why I've been struggling so much with the doctors. And I will definitely keep on researching any new info from the doctors here on Google Scholar.

I hope your PMR goes back into remission soon!

Carrie

Thanks Carrie! (@carpe_bean), I don't think the rheumatologist or any other doctor really knows why PMR goes into remission or comes out of it again. I wished I knew or could find out. That is indeed the $64,000 question. I going to start taking some tumeric powder with my coffee in the morning and with some tea at night to see if it helps at all. I do take a tumeric pill daily but I'm not sure it's helping so far.

I was switched from lisinopril which is an ACE inhibitor to spironolactone which is a diuretic for my blood pressure after the heart study I was in at Mayo years ago determine the high blood pressure was more related to hypertension than whatever they thought it was before (not really sure). I'm guessing thought and I have zero medical knowledge, training or background.

I think that is a great idea to take you husband with you to the appointments. It can really be hard to focus and remember what they are telling you and a second person is always helpful. My wife does come with me on anything major.

John

@johnbishop Hmmm, well I guess it makes sense that they don't know what makes it come out of remission. Seems like there's just so much that isn't known about many of the ADs. So much more than 50 years ago, though, so that's a plus. When I was telling a doctor recently about my grandma dying for kidney complications from lupus when she was just 39, he was pretty taken aback. Here's to living in the age of modern medicine!

I just saw another post on here about turmeric for liver issues. Since I'm not actually sure what's wrong, I've been hesitant to try supplements or medication for fear of making it worse. But I have a couple good links to read up about it and see if there are any contraindications for use. I really don't have any active signs of inflammation, which I think is partially what's confounding doctors, but if it can't hurt, I'm willing to give it a try. Although I cut out coffee awhile ago since it hasn't tasted "right" for months. So SAD! I've always been a coffee fiend.

I'm glad to hear you take your wife to appts. It was so hard for me to ask my husband at first - still is but it's gotten easier. He's doing a post doc so he pretty much lives at work. He'll prioritize me any day over work if I just tell him what I need from him, but it's so easy to fall into the classic "woman expects man to read her man and just do what she wants without having to say it" pattern. 🙂

@carpe_bean, You made me smile with your "classic women" comment. On the other hand men probably fall into their own classic man mode by not reading between the words. My answer to those type questions from my wife are "yes, dear" or "how high dear" (do you want me to jump!).

I did my second go around of adding organic turmeric powder (1 tsp) to my coffee this morning and remembered why I stopped after the last time I tried it. Doesn't taste too bad when you first mix it in but you best drink the coffee fast. It doesn't mix/dissolve in the coffee so after awhile it settles and you really get the taste. I had also tried it in my breakfast smoothie when I first started and it made it taste funny (not too bad though) so I may go back to using it in the smoothie. There are a lot of links that describe the benefits - here's one that I found that does a good job: https://www.organicfacts.net/health-benefits/herbs-and-spices/turmeric.html

John

@johnbishop Haha, John! You really made me laugh! I know my husband could relate to "how high dear." That's probably a good sign though. I'm guessing you've been married for a long time? Not many other relationships are as challenging or as rewarding!

I forgot to ask you that, about how the turmeric tastes. Bummer to hear it's not so good. I have an insanely good recipe too for "Power Puddin'", which is just a mixture of chia seeds, matcha powder, and almond milk. Then I pile on lots of blueberries and nectarine. Maybe I could hide the taste of the turmeric in there.

Thanks for the link! I'll check it out. Then I just have to find turmeric here in Germany...

@carpe_bean Do you have any Asian grocery stores or Health Food stores nearby? I would think you can get the turmeric powder there. My wife and I have been married going on 53 years. Fortunate for me she has excellent health but one never knows. I heard her and her twin sister talking about her husband and him being sometimes cranky. She was telling him about his Dad being in a nursing home while his Mom was still living on her own at home. She told him - "see, that's what happens to crabby old men. They get to go to the nursing home."

Good luck with finding where to get some turmeric.

John

@carpe=bean dear carpe bean, this is peach. many supermarkets now carry tumeric such as Publix in florida. and i suppose other markets in many states, it is now a very popular spice used (as you know) for many things. good luck.

@johnbishop Ooo, so that's where to find it. Thanks!

Wow, congratulations on 53 years! That's incredible.

My husband and I celebrate 20 years next month. Well, 20 years of being together since we didn't get married until 9 years ago. He always says that all our years together feel like five minutes.....underwater. SUCH a comedian. Your wife sounds like a hoot. A sense of humor is definitely one of the keys to a happy marriage.

I'll let you know when I find turmeric. 🙂