Wrong Track / Right Track

[Rubyaz]

Live in Rural Central AZ, Healthcare choices limited. Both Knees replaced in 2017 by a wonderful Ortho; it was difficult, but I am grateful no more bone on bone pain and I can walk enough to do what I HAVE to do.

Since 2018 been going back to Primary Care telling him something wrong, I hurt all the time. I have more or less diagnosed myself and then suggested to him what my problem might be. Did have my knees checked by Ortho and they are not the problem.

After years of suffering I finally run across on the internet that Depression can cause physical pain after I suggest to him maybe I need Depression Meds. He then prescribes Wellbutrin which has helped but I still hurt all over all the time. Finally gave him ultimatum; Blood test or Referral to Rheumatologist.
Blood test revealed Elevated Uric Acid Levels and finally after years of my suffering; HE diagnosed Gouty Arthritis. Prescribed Allopurinol which did help and i was feeling better. Was in for some other meds and told him I was feeling better. He said good, but despite your change in diet, last blood test revealed, Uric Acid levels are not dropping fast enough SO TRIPLE your Med ???? I doubled it and sure enough had reaction of pins/needles and tingling all over the Body. He told me to quit Allopurinol and go to Probenecid (alot more side effects) ? I have not done so, and just went back to one tab of allopurinol daily along with, black cherry supplement pill and another product called life-tones which are natural supplements to remove Uric Acid.

Hurt my bad shoulder having a short snowball fight with kids. Went back to him with my painful right arm in a Sling. When he walked in the room he rolled his eyes and gave me the look "Not YOU Again" !!!! I was CRUSHED and Cried later over being treated like an unwanted Nuisance. Told him how i hurt my shoulder and suggested an Xray to check the Bulg in my C4-5 Vertabrae because i was afraid i did damage.

He refused me an x-ray, saying I would just hurt it again and again because I am out of shape and he WANTS to go work out at "CROSSFIT Gym" where he and his wife go. Funny & Odd that HE suggested the same to my 83 & 86 year old aunt and uncle in August??? they laughed and never went back. Suspect he gets his membership free based on how many locals he refers. Yes, I am out of shape because I am 64, worked HARD all my life. and have had Fibro and Gouty Arthritis for years. Although I have lost 40 lbs in the last years, I still need to lose 80 more.

I am now searching for another Primary Care who might actually CARE !!! I am now experiencing even more Fibro symptoms (Pins & Needles Right Arm & Hand). Have made an appointment in the Phoenix area with a pain specialist that was listed on this forum for a CONSULTTION in search of some help. However; I have NEVER been to a True Rheumatologist and gotten a Formal Diagnosis.
Do you think I am on the right track ??? open to any helpful information .

 

[Jemima]

Oh my goodness, what an awful doctor I'm so sorry he put you through all of that. Is there any way you can switch?

Gout can cause body-wide pain, and you'd be amazed how many people struggle with it - especially those with a generic predisposition towards higher uric acid levels. A friend of mine starts having joint trouble if she so much as looks at bacon! Did he find you had higher inflammation markers?

The chronic pain and depression connection is something that is getting quite a lot of attention - particularly thanks to Curable - but isn't entirely understood, and isn't quite the same conceptually as fibro. Depression induced pain can, in theory, go away, whereas fibro will not. Fibro can be managed, but not cured. It's also important to note that a lot of different things can cause these kinds of symptoms, and the only way to get to the bottom of things is through thoughtful investigative testing. It sounds like what you really need is a doctor who is professional and dedicated enough to work through teasing apart all your symptoms. As for being out of shape, it's where loads of people end up with they're dealing with too much in life and with their health - all the more reason for a doc to help you figure out what your body needs, and not to judge you!

Hmmm, I feel certain I read something about higher uric acid levels in some fibro sufferers only the other day, but I can find it now. @JayCS does that chime with anything for you?

 

[JayCS]

Thanks for the mention @Jemima...

Since 2018 been going back to Primary Care telling him something wrong, I hurt all the time. I have more or less diagnosed myself and then suggested to him what my problem might be.

Hi Rubyaz: Not "the worst way" of going about it, particularly if you have no alternative or if there's still something good about a doc. Otherwise don't let them hurt you, just let them go. They may still be good for others. I also understand the way you take your med dosage in your own hands if you know you're going to get too severe sfx.

Before I suggest things, I still have a lot of questions: Not sure what you diagnosed in yourself: It sounds like: 1) A somatoform / psychosomatic pain syndrome caused by 2) depression? Plus 3) fibro? Plus 4) gouty arthritis? Do you now feel you have all four? You say you hurt all over and "even more fibro symptoms": how and when exactly? Joints? Muscles? Tendons? Alternating or persistent? Fluey ache all over? Like Jemima has asked: What do your inflammation markers suggest? And as she says: Pain caused by depression doesn't really fit for fibro - see the recent thread where we discussed that.
When you list pins'n'needles as one more fibro symptom that seems a bit quick to me, but whether fibro or no: Where exactly, how long have you had it, what might be triggering it? Probably a nerve, caused by muscle pressure, which might be related to a muscle problem somewhere....
Lifetones actually do claim that uric acid is the reason for fibro, but they who are making money with this claim are the only people who do claim this, it isn't backed by studies: most of us fibromites don't have a high level of it and it like in your case usually leads to being diagnosed with gout. Gout and depression can be co-morbid with fibro, but they are no proof for it, rather reasons for getting a better handle on these two and any additional symptoms.
Altogether, I can't see enough to warrant a fibro diagnosis yet, unless you've left a lot (esp. core symptoms) out. I'd defo suggest consulting a rheum. and like Jemima suggests getting further exams done if you think necessary. But on the other hand treat each symptom individually, because the fibro diagnosis will not help you much more for that. Reading here, esp. for starters @sunkacola's pinned advice post can help you with all of this, fibro or no.
What the fibro / depression diagnosis would point to doc-wise would be different meds, at least for a certain time to get up out of the mire and get your activity / exercises up again, if you can take their side effects, e.g. duloxetine (Cymbalta), amitriptyline (Elavil) and nortriptyline (Pamelor). But if you're anything like as sensitive as me to meds, I wouldn't, I'd address each symptom individually instead, by tracking, analyzing, trigger hunting, preventing & alleviating.
Ah, one more thing comes to my mind: Gout means diet - how are you doing there?

Went back to him with my painful right arm in a Sling. When he walked in the room he rolled his eyes and gave me the look "Not YOU Again" !!!! I was CRUSHED and Cried later over being treated like an unwanted Nuisance. Told him how i hurt my shoulder and suggested an Xray to check the Bulg in my C4-5 Vertabrae because i was afraid i did damage.

When our symptoms get so much, it overtaxes our docs just as much as us, it seems he'd rather you went somewhere else too... So why not? And why not rheumatologist if you have gouty arthritis anyway? BTW: In my experience "caring" doctors were not the best - well none were, but those were often the worst, did a lot of harm, so I'm not sure a caring doctor is going to help you get better, even tho it might give you more subjective mental comfort...
Good PTs are better for sort-of-diagnosing and treating our local pains such as your shoulder and pins and needles. Doing a workout is exactly what you fear might be totally wrong, so not helping. But a gentle PT can help sort out what you can manage and what you can't and find how much of what. A gym workout can help, it often used to me, so it is worth trying, but very very carefully. Just cos a doc suggests gym to many people doesn't mean he's getting paid for it, of course, it is always a good idea to try.
But what do you mean by bulge? I once had one next to my spine too which scared me, but turned out to be a totally tensed up muscle after a few days. Is it gone, was he right, or is it still there: you? If your knee-ortho was so good, and you trust him, wouldn't he help with your spine too?

 

[Jemima]

for starters @sunkacola's pinned advice post can help you with all of this, fibro or no.

Find that here!

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[Rubyaz]

Thank you for the additional insight and information, very helpful .

 

[sunkacola]

Just a word about exercise. to me it sounds as if a gym workout as suggested to you is not a good idea, and was suggested by someone who doesn't understand the conditions you have or how you feel. So I think you should feel free to ignore that.

I have been working with my FM for years now, and used to be a weight lifter working out hard every day plus doing physical work for my living, and even I cannot do a gym workout! It would be stupid to try.

But I do want to strongly encourage you to get some kind of exercise every day. Walk for 5 minutes, dance to one song, stretch, anything. You gotta move your body or things will get worse, and that is pretty much a guarantee.

As I say in my advice post, you can start so small that no one but you would even call it exercise. But start somewhere. And then you build up from there. Doesn't have to ever reach any certain ambitious point, just to the point that you can do it and it gets your body moving and your blood circulating. It will help, believe me. You just need to find out what kind and level of exercise you can do successfully and then keep doing it.

 

[JayCS]

Hmm... praps a different kind of workout tho...? Considering even an 83yo and a 86yo were also recommended it... Machines with their low(est) weights... "rehab sports" we call it here? I'd think the "baby steps" of exercise can be applied to absolutely everything, including workouts? (There are several exercises I can only do for a few seconds, but I've realized even that may be worth doing it.)

Of course everyone is different. My energy in the first year surprisingly used to be pretty straw fire type, with exhaustibility after 3-5 minutes: Short sharp stints weren't the problem. So a machine workout with pretty similar weights to what was sometimes possible on good days. Then due to acupressure & supps that got even better this year, so I was able to do things like cycle very quickly for quite some time, also something you can do in a gym. And altho I can hardly move since the jab, I was able to saw a few branches for a bit the other day - with lots of breaks in between, but it was a great fun 'workout', with no backlash. Lost that pretty completely again now, but on some days I still get some additional energy from my body's cortisol and I've learnt to assess & keep under control how far I can go.

 

[Rubyaz]

thank you for your insight and encouragement.

 

[Jemima]

Crossfit is very high intensity and impact, and is renowned for its higher injury rate - it doesn't use machines and would not be used for rehab. I agree with Sunkacola in the suspicion that this recommendation came from someone not really engaging with their patients at all! I can't imagine a fibro body being able to get on with that kind of exercise.