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Misdiagnosis? Help

Been diagnosed with fibromyalgia for 4 years none of the traditional treatments have made any difference to me, meaning I have been in chronic pain for 6 years without any relief. The diagnosis of fibromyalgia was made by a doctor who I was not satisfied with. Every doctor I have seen since then has just agreed with him nobody seem to be trying to get to the bottom of the problem and throughout all of this my symptoms have gotten dramatically worse and I am finding it difficult to walk to sit to go about my daily life. I have general symptoms which could really be anything, joint pain in my knees, hips, ankles, wrists, back, shoulders and neck, fatigue and bowel problems. The only shred of information I have received over the years is I have an inflammation marker CRP of 20 and then of 14 two years later, they have never looked into this further they told me it could be ANYTHING. Surely if it could be anything you don’t just stop there. Any advice or if you have suggestions of what this could be or if this sounds familiar I would love to hear your replies. Anything at this point would mean the world to me.

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Fedupredhead,

The Ultra Wellness center located in Cleveland OH.(216-445-6900) or in Lenox MA. (413-637-9991)

They are all Functional medicine doctors at these facilities. In other words... they are M.D's Naturopaths, AND Wellness physicians. They get to the "root cause" of AI's. Their motto is "We don't just give you an aspirin while your stepping on a tack "

They are dedicated to finding the reasons for your pain and not just slapping meds over them.

I haven't personally been to them but it's only because I hate to fly and it's hard to get away for me. You sound desperate and that's understandable. You need some relief. ❤

I did contact them.. The one in Ohio is closer to me. If you're in the UK.... well, you can still contact them. I've heard they will do Skype appts. Usually though, the first visit needs to be in person.

I am a firm believer in the leaky gut theory... Heal the gut.... Really help your AI's weaken. I also take LDN. Low dose Naltrexone. You might Google that too. Man, I hope this helps somehow.

Stella ❤

DX:PBC 10/16

DX: RA 4/17

DX: DeQuervain's tendonitis 6/17

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Thanks for your reply,

Unfortunately going abroad is out of the question for me, I am a student so it wouldn't be financially viable and also I am about to go into my honours year at university full time as well as working part time so finding the time to make the trip and follow ups would be very hard. I will definitely look into if they would Skype me. It is just concerning that they haven't really looked into it properly and I am concerned that I could be doing damage or have already done damage to my bones. I have been told I don't have Rheumatoid Arthritis however that only rules out one thing there are thousands of other things that could be going on under the surface if only they would do an X-ray! Thanks for your advice!! means a lot. <3

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My understanding is 'TrueNorth Health Services' stateside (in Santa Rosa, California, USA) does Phone (& Skype) consultations:

"PHONE CONSULTATION SERVICES

For those unable to come to the clinic in person, we offer phone consultations with our medical doctors. Fees start at $95 [USD]. Please contact the Center during office hours for more information or to schedule an appointment. (707) 586-5555." [ healthpromoting.com/clinic-... ]

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To learn more about TrueNorth's physicians (if interested), see: healthpromoting.com/clinic-...

[Dr. Michael Klaper ( healthscience.org/sites/def... ), comes highly recommmended. 👍 More about Dr. Klaper: doctorklaper.com/ ]

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For Functional Medicine (FM) practitioners globally, try:

functionalmedicinedoctors.c...

[Select 'Find FDM Practitioners in other countries' (to the right) & then click 'Display Results' button, to see a list of FM practitioners in your country.]

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Hope this helps, FedUpRedHead. (Suffering 6 years without relief is unconscionable. 😳 No one should have to endure such pain. 😔 )

No matter what 'flavour' of autoimmune illness(?) you're manifesting, an experienced FM physician can help guide you toward improving/ healing. 👍

Wishing you the very best, FURH. 🙏 🍀 🌺 🌞

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Oh, if finances are tight, there's abundant free 🆓 , quality, substantive information online. Reputable physicians (such as Dr. Klaper, et. al.) have free articles, videos, etc, that can help guide you.

Yes, it takes time/ effort to research, learn, & implement. Yet, you CAN do it. 👍 (Plenty of us have: 13 Bite-Size Thoughts for Autoimmuners -- Newly Diagnosed (or Not): healthunlocked.com/ra-warri... )

As a student, FURH, kindly consider it 'the research project of your life'. 😌 It's well worth the initial investment of time, effort, & struggle to learn and to do. The rewards come over time & can well influence the course of disease progression throughout your lifespan. 👧 👱‍♀️ 👩 👵

Please take good care. 🙏 🍀 🌺 🌞

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I replied to a different post of yours in another forum.

I wonder if a referral to something like the Young Adults with Chronic Pain Program in The Walton Centre would be worth discussing with your GP? thewaltoncentre.nhs.uk/112/...

If you consult the clinic in the US, you might need a substantial budget for private tests and imaging they might request. Do you have any idea of what private imaging might cost in your area so that you can estimate if the cost is viable for you?

"I am concerned that I could be doing damage or have already done damage to my bones." When was the last time that you had any imaging of your affected joints? If push came to shove, could you afford to pay for imaging of one or more joints that are causing you most concern wrt possible long-term adverse effects?

That said, if it is an auto-immune condition that is in the process of manifesting itself over time, then it can take some time for impacts to show up in imaging unless it's very aggressive. And it's not unusual for people with an AI condition to pick up a diagnosis of fibromyalgia before or after their AI diagnosis, as it seems like they're quite common fellow travellers.

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Thanks for the reply,

I have never had any imaging done of my bones as my doctors seem content with my fibromyalgia diagnosis and don't see there is any point in looking further, which seems ridiculous considering I'm having new symptoms and everything is getting worse. I feel that because of my age I am being ruled out of any degenerative or arthritic diseases! My symptoms could match a whole range of things but it does seem wrong that they haven't investigated the actually joints or bones themselves. Thanks for all your advice! I guess I just need to keep pushing them and hassling them.

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If you really want some imaging done, it might be worth your while to find out the cost - which might be £150+ depending on what you want done and if you can make a self-referral?

Would your family chip into this as a fairly unusual birthday/holiday present if this is viable for them? If it would be a reassurance to you?

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Hi FedUpRedHead

Are you in the UK? If so you might find FMA UK, also known as Fibromyalgia Action UK a useful organisation/web site to try.

My diagnosis started out as Chronic Fatigue Syndrome, then Fibromyalgia got added into the mix, plus Arthritis and eventually after a couple of years and finally getting to see a Rheumatologist who said it was both Rheumatoid Arthritis and AS, Ankylosing Spondylitis.

My GP was utterly useless for both the Chronic Fatigue Syndrome and the Fibromyalgia. His attitude appeared to be, well I have given it a name, so you can apply for benefits. He never offered any treatment other than painkillers and anti-depressants. His stance was there is no other treatment, don't expect to recover and don't expect to ever go back to work. A really great help, just what anyone needs to hear.

I might not have returned to paid employment, but I did some charitable fund raising for many years and set up a Fair Trade Business, which I ran for the best part of a decade.

Currently I think my health is in better shape than at anytime since 2004, so things can and do improve.

I just hope it is not too long before your health also begins to improve.

AARA

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Thanks for the reply,

I am in the UK will look into this thank you. Very similar to my GP unfortunately they see me as a nuisance and seem to think I am a hypochondriac but I am the only one trying to find out what the hell is going on. Sorry to hear you have been through the same, its such an awful feeling! I have been told about AS think this is something I need to ask my GP about as a lot of my symptoms aline with this. I am currently going into my honours year at full time university and work part time so it has been a nightmare, but no choice but to battle on. Glad to hear your health is better and I can only hope that I can say the same soon.

Sarah

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FedUpRedHead following up on what AARA said, I've just taken a look and there's a Fibromyalgia Action UK forum here on HU: healthunlocked.com/fibromya...

I wonder if you might get some advice there from people who've been diagnosed/misdiagnosed etc.?

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