Hello Davey, I’m pleased to make your acquaintances. Thank you for your support and understanding only people that go through this can understand how it feels.
Yes moving to North Carolina was better weather-wise but when it comes to medical it’s a nightmare, it took me 6 months just to establish myself as a patient in the pain management office. And then prescriptions for opioids… it’s unbelievable what you have to go through, first to get one and then to find the pharmacy that will be willing to fill it for you. Unfortunately after trying a lot of different medications through all these years opiates seem to help me.
Nice to meet you too! Oh yes moving to a different state with insurance/prescriptions/opioids is a nightmare. Luckily you found someone because I know a lot of folks who have not been able to acquire a doctor willing to prescribe them. Unfortunately when they came out they were overly prescribed to a point now they don’t like to prescribe because the pain comes back X 10. I find it challenging to be on them and I think I did better before when I wasn’t on one but I have been on the same med for 10 years. Our pharmacies here in Mass don’t usually have an issue but it depends on the dosage because they were having a shortage or at least that’s what the doctors and pharmacists were telling folks. I have so many other medical issues where I’m lucky I don’t have to jump through as many hoops but I do still jump through a few lol. Everyone is different as to what medications work for them. I have to point out I’m not advocating for any medication and every individual needs to make an informed decision with their doctor on what is the best course of action. I’m also a Moderator here lol. I haven’t been on here as much as I like but am hoping to be quicker at responding. Luckily Ben’s Friends has a great supportive staff that helps with offering folks some extra support or just lending an ear. 
Do you like it down in NC otherwise? Do you have any hobbies that help you get through the day?
Davey
Hey Davey, thank you for taking your time and talking with me. Lol but as you see it takes me a while to answer as well. Maybe because you really are the first person to keep conversation with me since I joined few years ago.
Yes, I like NC. We have our property by the water and I find that very therapeutic. To be out in the nature instead of concrete jungle is way better. I’m trying to start a garden…
But it’s taking me a long time to get there. As you know, we can’t do as much as other people but even an hr. a day outside is great. I had a lot of hobbies, I make custom jewelry with Swarovski crystals, I enjoy sewing, I like creating things. But my arthritis is getting worse and at times it is impossible to do anything…
What about you?
Hi im new on here and joined. Im not disgnosed yet all my aymptoms fit this condition. The fatigue i have is out of this world , eyes burn and need to lie down a lot. A lot of pwin. Had lifetime of neck pain and as years went on got it all over the place. Had multiple cortisone injections followed by surgery. My hip has gone now 3 weeks ago and they are going to inject that with cortisone guided by ultrasound. Dreading that as it sounds psinful and my other injections have been painful but i didnt have to weightbear on my shoulder elbows or wrists. How do you get a proper diagnosis and how can i force myself to work through the pwin and exhaustion. Have no choice as im in dire financial situation to extent ive jad no power for months. I also feel the cold terribly but in hotter weather (no temperature mainrenance), cant cool down and get bad headaches and migraines. I have been diagnosed with hypothyroidism as well but its becer been this bad. My anxiety for last 2 years has been through the roof and i relate all the escalation of things causing pain developing in line with that. I can hardly function or stay up. Been in bed all day. How do others here combat these symptoms and what bloodtests can i insist my dr do to gove me firm diagnosis please. Thank you for having me here.
Hi endless and welcome,
good you’re reaching out in your tough situation!
The problem with fibro is that even if your symptoms fit this condition, you may still have something else that’s causing them. So part of the diagnostic process is getting all other things excluded. For this you need a doctor that’s interested in getting to the bottom of things. Their interest in helping you is more important than their specialty, each can try to find something and should then send you on to those they think may help you. Starting point is usually GP/PCP and/or a rheumatologist
Some might be irritated if you start off with your suspicion of fibro, others you can get interested by doing a fibro checklist and taking it with you to them (the ACR 2016 criteria or the UK 2022 guidelines that are based on those), they may even be thankful for the pointer.
There are no blood tests to prove you have fibro (except scam), but basic things your docs should watch out for are deficiencies in things like B12, D3, generally vitamins and minerals, like iron.
For more serious stuff inflammation markers for rheumatological and autoimmune diseases (rheumatologist) and hormones (thyroid etc.) need to be checked.
Some docs agree with the 2016 ACR criteria that if you have the symptoms you have fibro, whether you have something else or not, but that you need to check for that. Most will say you don’t have fibro if you have something else that explains the symptoms. I spose it depends what that something else is, whether it can be helped considerably, whilst fibro is more about workarounds.
So you might not have fibro, but essentially you can still use all the 100s of tools that can help with fibro, so I think it’s helpful just to go ahead even without a formal diagnosis.
That’s a catch 22 - but it sounds like it’s of the kind that will prevent you working, even if you need to. Have you tried seeking other financial, coping & self-organization help, counselling and support from state or church? We can’t get out of impossible situations alone.
If you’ve decided you have to work despite the pain and exhaustion, you need to first work on it. (If you can’t work on it, you won’t be able to work, cos it doesn’t sound as if you’re in a short-term flare…)
So your first steps would apparently need to be to get motivation up and laming anxiety down at the same time. My long experience with anxiety is it can send us into doing nothing or running in any old direction except the right one. So I regularly switched between counselling / therapy, going on forums (mailing lists in the olden days it was), reading books, and learnt how to confront my fears (in my case mainly social) and that when I endured the pain of the fear without judging or moaning it, like animals do, with a radical acceptance, it faded and not only does the suffering cease, but part of the pain does, too. Luckily I learnt all that before I got fibro, so could apply to that and my other conditions (which I also had some of before fibro).
That said I was on sick leave for 10 months, had to slowly try to get back in, managed to work 30% for a time incl. commuting, then the jabs came and brought me down, so I can now only work online a bit. I have a pretty high quality of life by working on each symptom singly and accepting the rest (serenity prayer), also by looking for being happy, an art everyone can learn - I do it mainly by watching and getting to know the birds, bees and flowers in my garden and all around.
Well, I never stay in bed, which is also what sleep experts recommend - sleep is part of it all of course. Better sleep doesn’t solve pain or fatigue if we have fibro or similar conditions, but can definitely take the edge off them, reduce them, and is important for quality of life. For the first few years, I believed it helps to “be sick”, to lie in, keep the blinds down, hoodie over my head, shielding myself. But learning about modern sleep hygiene, e.g. getting early & late sunlight in my eyes and not using screens much after 7pm, getting up and out, even if I can’t function or move has this year improved my baseline. Much less headaches, fog, more effective sleep, more “daytime”.
For local pains like your eyes burning, neck pain, hip pain, shoulders, elbows, wrists I have an enormous toolbox, of stretching, rubbing and pressing, partly learnt from manual therapists, partly youtube, partly just trying out my own ideas. Mostly stretching, pressing, rubbing gently and regularly in various ways.
I keep clear of meds, cos they only harmed and dulled me. But after the jabs, not for fibro that much, I increased my supps considerably, for other conditions, too.
Cold and wind were my biggest problems, but I’ve adapted my clothing layers more and more (5 pairs of socks and long johns most of the year 24/7). “No temperature maintenance” I call “broken thermostat”, and that sounds like your hypothyroidism and your treatment isn’t helping? Are you on levothyroxine (“T4”) or more? I readjust using alternate hot and cold treatments, esp. very short alternating showers, as often as possible cold, which might be an idea for you in hotter weather - a blast of cool. Or if you can’t take a blast just parts of your body like the arms or the legs.
So: a set of good docs, some good “counsellors” for all areas, some good manual therapists and learning from them to manage your symptoms yourself. It can take a while of searching before we have some that are OK, so best we learn ourselves right from the start, self-advocate. Question may be if you want to stay mainstream or try functional docs?
Hope there’s a few ideas here for you?
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Hey @endless ,
Welcome to Ben’s Friends.
My name is Merl, I’m a member of the modsupport team here on Ben’s Friends. I’m also a former Kiwi, now living in Oz.
You’ve been given some VERY good information here by @JayCS . It has been many years since I lived in NZ, but trying to obtain a diagnosis for a rare condition can sometimes be very difficult via a GP/PCP, because of this, JayCS’s suggestion of a rheumatologist, I would strongly support. GP/PCP’s can be great for your more common ailments/medical needs. You ‘could’ try to educate them, but often these medical types don’t like us patients trying to educate them. They often think they know-it-all, they don’t. What you need is someone with a bit more specialised knowledge. You need a rheumatologist.
Merl from the Modsupport Team
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Wow, thenl you so much for taking thw huge amount of time i know it would have taken to give such an in depth response. I will go over this carefully and see what can be done
I have had the hip now injected and now notice pain somewhere else. Obviously it was always there but the hip was the most severe, now its not, im noticing other areas of pain. Same has happened in the elbow, notice now the wrists are extremely painful. It seems to be never ending, i ease one severe atea to have another show up. Once again i will spend time going over your reply properly and taking in all the advice.
Edited to correct typos have difficulty typing
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Hello and thank you also for your reply and Warm welcome. Im in a prevarious position so affordability is a rel struggle however i will investigate. I mentioned to gp id like some investigation done but seem to have been fobnwd off with blood tests which he said returned not showing anything of concern. Im having a bad day and have had bad weekend also but will come back and read carefully the information given by member above and also your suggestions and information. Thank you again.
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Ps how do you quote different areas of posts like you did plz
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You’re very welcome! Often in such a load they’ll only be few ideas for someone else, but maybe that’s a start or maybe even that’s something crucial…
Excellent that you realize that “obviously it was always there”. Many describe this as an effect of pain “moving around”, without realizing such connections. Others are for instance that these areas are connected either fairly directly or via some relief posture.
Yes, it does - until we get on top of it all. The way would be to motivate ourselves to be diligent and keep on our toes with every new thing, try out varies techniques, spend a little time every few hours on each area. Slowly we can manouevre them all down, rotating the priority. They probably won’t completely stop, mine don’t, but eventually we can reach an attitude of “zero tolerance”, so we treat each bit as soon as or even “before” it comes up.
Example: I’ve been working on tender spots around my jaw joint, just cos occasionally there is a pang there which after having solved many teeth and other problems seemed to be the tendons. Pressing them gently in different ways once or twice a day for a few minutes like I’ve learnt from manual therapists I managed to get most of the pain down inside of a week. Which was brilliant for today as I unexpectedly had a fairly severe tooth treatment, which aside from smashing me completely of course also influenced the sore points of my jaw joint from holding my jaw open for most of 30’. However only one new spot has added itself next to one that had remained, all the others are still OK. And of course I’m now treating it again in regular intervals.
That’s good to know. Youtube physios are my friends for free treatment ideas… (and I now prefer them to going anywhere)
For a single quote you can mark it and above that it says “quote” and “share”. Pressing “quote” opens a reply window with the quote in it and after that we can carry on writing. For further quotes we leave the cursor where we want that quote, go back to the place we want to refer to, mark like before, press quote like before, and that quote will then be added in the same reply.
Hope that works for you. I’m on a laptop, I bet it’s harder on some mobile…
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Dumb me couldnt work out how to do that even with your instructions. The headaches are absolutely killing me.
Oh, no worry, might not be you at all. We can go thru it bit by bit:
Have you been able to mark some text at all?
If so, do the words “quote” and “share” appear above or below what you’ve marked?
I think most problems i have is due to issue that i dont have laptop or computer. Just eorking with smart phone only.
So if you mark a forum word on your phone, don’t the words “quote” and “share” appear?