i began getting bad upper back neck and shoulder pain on 18th september 2022 suddenly, which gradually became worse and worse so i went to see a a chiropractor. after my first session i feel it really helped but then after my second it all went down hill again. i have stopped going now after 5 sessions and feel i am back at square one, if not worse.
my spine hurts, my ribs, lower back bones, shoulders, neck, everything. i've also started getting aches in my muscles. my shoulders and neck are extremely hard.
iv been trying to do stretches that were given to me and have a physio appointment soon.
my blood tests came back with slightly elevated results for an autoimmune response so been referred to rhumatology. i also have only slightly low vitamin d levels.
as it's been nearly 2 months does anyone have any pain relief recommendations- and how long do these flare up's last? i take NSAID's, deep heat cream, deep freeze etc, it only helps for a bit and not completely. Also can anyone recommend any supplements that have helped them?
since writing this I now wake up with bad pain throughout my fingers and it continues through the day. This morning my arms were in agony.
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Amywoodx
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Wait until you see a doctor….there are many different types of autoimmune diseases & many drugs to treat them….& you should always tell your doctor about any supplements you take, as they can react with prescription drugs. On this site I’m afraid we are not medically qualified to recommend any supplements… I only take prescription drugs…..but that is my personal choice I hope you get an appointment very soon.
Hiya Amywoodx. I'm sorry you're experiencing all you are, though it's a positive that you've been referred to rheumatology. Examinations, repeat blood tests & imaging should indicate just what’s going on.
I'm afraid as we're not medically qualified we can't recommend pain relief, though your GP should be able to prescribe something for the interim, just as mine did. You could ask your GP about supplements, though I would think it would be wise to hold off taking anything that may interfere with diagnosing you. Your Rheumy will be able to advise once you know what may be helpful, or will advise what's not more importantly maybe! It's likely it will be recommended that you stop anything which your GP may prescribe also (if it is) a few days before your appointment, again so they won't interfere, give false readings of inflammatory levels etc.
If you have any further questions which we may be able to answer from experience just ask, someone will relate. Meanwhile the NRAS site might be of interest nras.org.uk
You could try having a massage, although this will only be a temporary help. It sounds like you are already doing as much as you can for pain relief . I would also say don’t go and see a chiropractor again.
In order to advise re pain relief, you really need a diagnosis, as relief will differ depending on the cause. One way of knowing if it’s inflammatory or mechanical pain, is how you feel sitting still or moving. With any inflammatory pain it’s worse at rest and eases when moving, whereas mechanical improves with rest and worse on moving. Your pains sound similar to mine, I have ankylosing spondylitis. I’m unable to take nsaids due to having a stroke at 52. I do take a med called Baclofen to ease my muscle spasms and my gp recommended adding magnesium at night which also eases muscles. I use a pain patch, which gives me a constant background dose of analgesia and helps me sleep without waking in agony. I’m also on a biologic which targets some of the inflammation.
As Nomoreheels says it’s a good idea leading up to appointment, to stop things like anti inflammatories. They will probably want to examine you, and see how stiff you are. Nsaids could make you more flexible and hinder a diagnosis.
Unfortunately it’s not usually a case of getting a diagnosis on your first visit, they will probably order further blood tests and scans. Ankylosing spondylitis is difficult to diagnose, and currently 8.5yr, with the charity NASS currently working to reduce that to 1yr. I’m not suggesting you’ll wait that long for your diagnosis, although mine was 25yrs from being told my spine showed issues on X-ray that suggested I would struggle as years went on. Unfortunately all my back pain was blamed on my career as a trauma nurse.
Heat pads are very good with back pain. I have a little electrical one that maintains its temperature. Stretches also help as it breaks up the inflammation. There are loads of stretches specific to AS on the Nass website. Hope you get answers soon, and some quality of life returns 🤗
Has Polymyalgia Rheumatica been considered, my sister has just been dx with this, it started with shoulder pain on one side, but soon moved to all over. Hopefully you get to see the rheumatologist soon, she is however being monitored by her GP, she’s taking steroids and having regular blood tests. Good luck x
That's not daft at all. My GP advised using a single "butterfly" pillow for my neck, back and shoulder pain about 30 years ago, rather than the two pillows I'd always used before. It reduced my pain significantly because I think this method supports rather than distorts the neck.
I am not suggesting that this is your problem but the symptoms sound very familiar. I have been diagnosed with Polymyalgia Rheumatica onset Rheumatoid Arthritis. My symptoms came on suddenly. I went to bed one night and couldn’t move the morning after. I felt like I had been hit by a truck! My neck and shoulders were the worst and I couldn’t lift my arms. I am taking prescribed steroids but when I have a flare I find ice packs alternating with heat pads helpful. Hope you get a diagnosis and treatment soon.
This sounds very much like the onset of my autoimmune disease in spring 2020. My original diagnosis was polymyalgia rheumatica (not the worst AI disease to have). I was treated with steroids at first, followed by hydroxy chloroquine and then methotrexate. many people do well on these drugs, but I had serious side effects and ongoing flare-ups, and was prescribed a biologic early this year. The bio seems to keep me fairly functional and stable so far, and I am down to 1-2 mg of prednisone daily, after being on relatively high doses for months in the past. My disease has morphed into my feet, mainly, and the most recent diagnosis is sero-negative spondyarthritis (sigh). So be aware that things can evolve, and be sensitive to building side effects of drugs prescribed. Autoimmune diseases seem to be very individual -my rheumatologist laments that no-one can ever have a textbook case of anything:-). So, patience and mapping your symptoms and reactions to drugs is really important. Good luck and hoping you’ll soon achieve dome good results!
a hot bath helps me. It is scary, I know. Don’t take any weird supplements. Just normal ones like vitamin D because once you take the medication you don’t want any interference. For me the onset was the worst and even though I was miss diagnosed with fibromyalgia I did start to feel better without any medication so hopefully you’ll feel a bit better while you wait to see a rheumatologist. Do be a squeaky wheel so you can try to get an appointment as soon as possible. All the best for a quick diagnosis of some sort.❤️
thank you, i have heard people say that their onset/initial flare up was the worst for them because they 1) didn’t know what it was and 2) knew how to manage it when they felt a flare up coming on so I really hope this is the worst it gets & it doesn’t affect me in worse ways in the future. I’m glad to hear you began to feel better without medication, that gives me some hope . Do you remember approx how long it lasted before it started to feel better? Mine has been almost 2 months now ☹️ Just patiently waiting for it to wear off eventually
Listen to Mostmoses and write down your symptoms etc. I didn't do this so I am not sure how long it took for me to feel like I was having pretty good days again. You have already gotten through the first two months and it will get easier and less scary. It sounds like you have had a rough time. It is hard because they will want to make sure that this isn't something that will just go away on it's own. It sounds like the doctor thinks it is time for you to see a rheumatologist so that is good. I hope that someone can go with you. I remember being so scared that my comprehension was really low and I barely remembered anything that was said. I certainly have shed many tears and have had a hard time with my journey but I have survived and you will too. ❤️
We are all different and what’s good for me and my condition may not be good for anyone else. Once you have a diagnosis all the advice here may gel together to help your condition.
Until you see your GP - I find heat, gentle stretch and exercise helps and I have a massage wand to reach my neck and back.
I use a mixture of over the counter and prescribed pain relief and find Volterol 2% (prescribed) useful as it’s not ingested. Elastic bandage is comforting on my knees and wrists.
Living with Stills Disease for the last 40+ years led me to try many supplements, herbs, vitamins etc and none made any difference that I could determine. I use good food and gentle exercise to do the best for my body and this includes a glass of red wine a day 😀
I really hope you get a diagnosis soon, chin up, we’re all here for you.
COD liver oil capsules. Glucosamine. Calcium. However this was 20 odd years after diagnosis and perhaps too late. Weight bearing exercises reversed the osteoporotic diagnosis thankfully. More recently I was seduced by the turmeric trend but after a year I couldn’t feel any benefit so gave up. These days I eat all the good stuff and am vegetarian. Luckily for me I’d rather eat raw carrot than chocolate and find avoiding trigger foods like flour help to prevent ‘flare ups’
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