Advice about how get my go and pain specialist take me seriously

[Lobo1967]

I'm suffering from lower back pain , buttock pain , hip pain had lumbar MRI and hip x ray according to the doctor the findings of those test were minimal degeneration that was in February that I had the scan, now my pain is getting worse and the doctor and pain specialist keep telling me is nothing wrong structural in my body and nothing they can do to help me. Im feeling very anxious any advice on what to do to get the doctor help me?

[Astridnova]

In your place I would consult a chiropractor, who might be able to fix the problem, or, failing that, would have a different perspective from the medical practitioners. If that did not help, I would try a remedial masseur. For the pain, I would try hot wheat packs. You might find this helps. I hope so. If none of that helps or elucidates the problem, maybe consider things like B12 deficiency or hypothyroidism, which can cause diverse sy proms. All the best.

[Lobo1967 in reply to Astridnova]

Hello Astridnova, thank por the message, I had few appointments with a osteopath did help temporarily, are chiropractor a different kind of specialist? . To be honest is been very difficult

[Astridnova in reply to Lobo1967]

Chiropractors specialise in spine and related problems, using different approaches to osteopaths. I'm just thinking that different approaches might evolve a useful theory and treatment or explanation for your problem, since the medical practitioners seemed stumped, and often are with the sort of thing you are describing. What did the osteopath say to you? Did he or she have an explanation for your problem? What sort of treatment helped for a while?

[Lobo1967 in reply to Astridnova]

She did some kind of manipulation apparently my hip and pelvis where twisted or something like that but at the end she also told me nothing else could offer

[Astridnova in reply to Lobo1967]

She did not suggest you come back for repeat sessions? If it were me I'd try a chiropractor to get another opinion. Also they are more specialized in spinal manipulation. It might take a few sessions and maybe some stretches or exercises at home. Was this problem the result of an event, like an accident, or sitting in an unchanging position in a chair at a desk or something? Did it come on slowly or fast? Can you still walk? Do you do exercise? Have you tried massage or heat packs?

[Lobo1967 in reply to Astridnova]

I went few times but didn't help much, the pain started after I had COVID in March 2022 UTI symptoms but no infection then gp suspect nerve pain send me to "urologist" Wich they refused to see me , about exercising u don't do much mainly walking and some the physio show me in a link on the Internet , l walk but I starting having pain on the front lateral right hip and a lower back

[Konagirl60 in reply to Lobo1967]

Could you have a hip labral tear? Could the other pain be due to that?

[Lobo1967 in reply to Konagirl60]

At this point I don't know what I have the GP , pain consultan do no want to investigate anything more , had MRI and X-ray a that is been told nothing major only the pain . That could be possible

[Konagirl60 in reply to Lobo1967]

I feel you are being brushed off. Can you try another doctor? Can you go private?

[Lobo1967 in reply to Konagirl60]

What do you mean brushed off? . At the moment I feel not trust in any doctors but I may try another GP or private

[Konagirl60 in reply to Lobo1967]

You’re not being taken seriously by your GP. That is why I suggested seeing someone else.

[Lobo1967 in reply to Konagirl60]

I understand I'll do that

[Konagirl60 in reply to Lobo1967]

Hi again. My GP and ten other specialists I saw didn’t believe that I had a severely pinched nerve in my groin. As a result, I was misdiagnosed with vulvodynia and cyclothynia. It was utter nonsense.

I had to hire and pay a ‘registered nurse consultant’ to procure my life saving and sanity sparing surgery. Not one doctor would facilitate it.

Can you hire an advocate ? Thinking of you.

[Astridnova in reply to Lobo1967]

Oh, COVID! If nothing else, don't stop walking. MAybe do a search on Health Unlocked for COVID and nerve pain, and describe your symptoms. I know that big doses of Vit D helped me with nerve pain from shingles. You have to be careful not to take too much. I developed a wierd kind of thirst as a symptom of too much D and reduced my dose, but it did help. You might also try Vit B 12 oral or via IM injection because that restores damaged myelin sheaths and you could have become depleted in B 12. Have you tried hot wheat packs alternated with ice, or just by themselves?

[Dunstablian]

Having suffered chronic pain since 2016, i found GP's show little empathy to patients suffering from this which is frustrating and disturbing. I found that joining as many organisations as possible, Patients Association, Health Unlocked, Pain Concern etc and quoting the advice given on such sites, gently persuades my GP to take action where he has previously shown a inclination not to do so. It may well work in your case. I don't think that the possibility of addiction should prevent patients from getting the pain relief they desperately require, especially if your in your latter years as i am aged 76. Try it.

[Lobo1967 in reply to Dunstablian]

Hello thanks for the advice is really frustrating , I feel very disappointed with conventional medicine I started thinking that they are useless every time I go to see a GP , physio, etc they just look at their PC reading a letter that a pain consultant wrote about 9 months ago where it's state that is nothing wrong with me is like they are treating the PC not my symptoms,honestly I'm starting to feeling very worry and scare. In my last appointment with GP I nearly lost my temper I think I'm suffering from depression and anxiety but GP won't even mention or asked about my mental health

[cyberbarn in reply to Lobo1967]

Do you know that inflammation can cause depression and anxiety? And pain can be a sign that you have inflammation. X-rays don't show inflammation. It might be that when the inflammation is under control, the depression and anxiety will pass.

[Lobo1967 in reply to cyberbarn]

Hello the only test I had was CRP and according to go was ok , what kind of test detect inflammation and what to do to control it? Thanks

[cyberbarn in reply to Lobo1967]

NSAIDs work on inflammation, but over the counter ones might not be strong enough. There are some inflammatory arthritises that don't show up in blood tests. For instance psoriatic arthritis and some types of rheumatoid arthritis don't show up in blood tests. Have you seen a rheumatologist?

[Lobo1967 in reply to cyberbarn]

No rheumatologist as I said GP an pain consultant basically discharged me and told me nothing they can do for me is over according tho them

[mauschen in reply to Lobo1967]

it’s important that you discuss your mental health symptoms with your GP. This can have a big impact on pain.

[Lobo1967 in reply to Dunstablian]

My GP showed me 0 empathy he even wrote in his note a health anxiety Wich he never mentioned at the appointment

[OSTEOARTHRITISRA]

Hi another option if available in area See if any

advocates

In area

They go to appointment and to make sure you get heard

It does work

You get a change of tune from docs

The pain specialist they are a hit and miss some great some ok Some rubbish

With them it should be about you and want you want and any goals

You shoukd be treated med wise for pain

And the mental health

Not sure if any other docs in surgery to see

I'd have it out with them

Request a print out at gp surgery

To see notes and any diagnosis etc sometimes there is something there

Also can hand letter in to request all your diagnosis to be picked up at surgery and take it from there as well

[Lobo1967 in reply to OSTEOARTHRITISRA]

The real problem is that after the appointment with pain consultant and the letter she wrote saying that MRI and X-ray results don't explain the causes of my pain she assumes that nothing is wrong and after that Al the other GP, Physio etc read that and that is no one have more ideas to see what else they can do that appointment was in February 2024 and my symptoms has been changed and getting worse but they don't listened anymore. But I will contact some advocate adviser . Thank you for you help

[OSTEOARTHRITISRA in reply to Lobo1967]

Yeh not good id maybe have 1 more go at the doc have it out with them ,Tell them you have anxiety and depression as well and want all this sorted and diagnosis if yiu can't then refer me if it's to complicated for you,

Would have mentioned

Fibromyalgia

Usually their answer to this situations

But your symptoms don't match that unless you have more symptoms

Hope you get it all sorted soon

P.s mind your pain is real

[Lobo1967 in reply to OSTEOARTHRITISRA]

Hello what did you mean with refer me , did you me to tell the doctor to refer me to an specialist ? I already asked that but he won't do it he wrote in his note that I look healthy to him that I even smiled but I will have to do something. Thanks for your comments

[OSTEOARTHRITISRA in reply to Lobo1967]

Sounds a bit like the dreded

dwp

Yes a specialist, if no diagnosis, I'd change do if possible, I'd deff put in writing yiu want yiur diagnosis left at reception to pick up in 10 to 14 days ,and in meantime ask for a printout of your notes,then tak from there Just some ideas

[Astridnova in reply to Lobo1967]

This article reviews a stack of unusual viral causes of nerve pain that your GPs have probably never even thought of. Hopefully you don't have any of those and it is just post-covid. However you could ask them to check. ncbi.nlm.nih.gov/pmc/articl...

[Lobo1967 in reply to Astridnova]

That look very scary my doctor won't have a clue about that I think someone sat for him to pass the exams at the medical schol😂

[Astridnova in reply to Lobo1967]

Well, at least it shows your sense of humour is still intact! That's the first test. Really, if it is damage to blood supply to nerves, muscles that results from microhaemorrhages in the capillaries in COVID, as is possible, then I would expect you to be able to improve it over time with the usual time-worn methods:

- applying heat to get the blood-flow up

- massage to get the blood-flow up

- lifting small weights daily and doing squats as best you can - increases muscle-size and ability to store energy, but also to work despite damage. (I use a program for seniors 15 minutes daily from a free youtube site with many choices)

- massage and heat to get over the initial aches from shocked muscles

- keeping Vit B12 up to keep your haemoglobin good, which transports oxygen all over the body to muscles etc, in a micro-exchange of 02 and C02, which COVID interferes with by damaging it at micro level (is my understanding)

Magnesium (I use 500mg daily) is good for muscles and heart

And Vit D3 about 4000iu daily, more or less for a while to see if it helps, paying attention to any signs of toxicity. (My doc looked this up and it is a little-known but known treatment in his medical reference app.)

How old are you, may I ask?

[mauschen in reply to Lobo1967]

If you have degenerative spinal disease, you might have a diagnosis of Osteoarthritis, which can be a very painful condition.

I have both and manage my pain with heat to soften the muscles and bring the blood supply to the cells.

2-3 times a week, I attend Aquarobics which helps me to move my body in ways not possible out of the water.

I also have inflammatory arthritis (Gout) which is treated with Febuxostat and has been extremely effective.

Once every two weeks, I attend a private physio who works on loosening the hard knots which prevent movement.

Daily, I do an exercise regime made for me by the physio which loosens my joints in the morning and stretches before bed.

A good physio is worth their weight in gold.

Chronic pain is seen as psychological but often there can be a mix of acute and chronic.

Ask your GP to check your vitamin D levels as this deficiency can cause tremendous pain.

Are you taking Simvastatin for hyper cholesterol?

You could join an arthritis support group but you need to sort out any feelings of depression in order to benefit from any form of therapy.

As a fellow pain sufferer, I understand your frustration…it is real!

Please try to self manage, it’s the only thing that helps me.

[hazmatrec]

hello! this sounds frustrating and confusing and hard to deal with when everything is affected by being pained. I don't know how to help with the specific pain. but. I have had real trouble with being listened to, and also with saying enough. I have had help from two specific places: first from PALS, the patient advice and liaison service; second, from my local based outlet of the advocacy network, which is meant to be available to anyone using the nhs who could use some of that kind of support. pals sent in and made doctors, departments, talk to each other. I was exceedingly impressed! the advocacy service person listened to what I wanted to be saying, what I wanted to happen (a skill into itself! ), and then, with my permission, communicated that at times with me there and not me there, and brought info back, and asked about next step.

I recommend finding the local folks that do this. as one advocacy person told me, I'm busy dealing with my illness. ever. single. day. I often don't have the oompf to figure out how to say things right to the external world. the advocacy, the pals, they are meant to know how the systems work. they can help. oh, it worked. they helped.

the support and care here in this forum is awesome, too.

kind regards

cath tyler

[DollyDutchGirl_1946]

My GP said that there was nothing he could to take my pain meds to a higher lever but, that he’d refer me to a pain clinic who, if they felt it necessary, could direct him to prescribe certain meds. It took a few months for the appointment to come through and several appointments through out the next 18 months. The person I was seeing was surprised at how knowledgeable I was about my issues and, available medications. She also said I appeared extremely strong in how I was dealing with my obvious pain. My problem was, I told her, was that the pain meds were no longer doing their job and, that breakthrough pain was next to unbearable. After a couple of sessions discussing how my meds weren’t working for me, it was decided that she would discuss my issues with the consultants - then, she would write to my GP with the results and sign me off from the clinic. Wasn’t sure what to expect - but, around ten days later, I received a message from my GP to say an appointment had been made for me at the surgery, to discuss a change over of my pain meds. RESULT…!! The appointment resulted in having the 70 mg Amitriptyline titrated down over 6 weeks, whilst slowly titrating Duloxatine up 2 x 60mg a day. Next we’ll be changing the Dihydrocodeine and paracetamol x 4 times daily to Buprenorphine patches, starting off on a low dose and gradually taking up to what I need to control the pain. Fibromyalgia was also confirmed - along with lower back facet joint hypertrophy - which, both together, explains a lot of my symptoms. BTW I am now 78 years old, can only stand for a few minutes and need a walker with a seat for short distances - I also have bilateral hip replacements.). Anyway, I’m now, thanks to the pain clinic and, my amazing GP, on my way to easing at least some of my pain. I truly do hope that you find someone to who can help and guide you forward to discovering what you need to help you on your search for the correct pain relief for you……

[Dunstablian]

In my experience, GP's are not empathetic with patients complaining of back pain. I have degeneration of the lower spine and hips. I also suffer from a bladder condition which means i self catheterise in order to fully empty my bladder. In addition to that, i have post op scar tissue pain in my lower abdomen due to a 2012 resection of my bowel. All of these condition cause chronic lower abdomen and lower back pain which despite pain meds is appalling. It keeps me awake every night. My GP's response, refuses to up pain meds in case of addiction and withdraws my 2mg Diazepam which helped me sleep for a few hours at night., for the same reason. For goodness sake, i am 76 years of age, i am not concerned about addiction in the few years i have left. I just want my quality of life to improve and that means controlling my pain. That is what GP's are there for in part, but many others i know, running up against the same arguments when requesting effective pain medication. We are condemned to spend the remainder of our lives in chronic pain. I fully sympathise with you but sadly i have no answer to your question.

[DollyDutchGirl_1946 in reply to Dunstablian]

Is it possible that you could ask for a referral to the local NHS Pain Clinic ?? It maybe that they can help you - and direct your GP to give suitable pain meds, that the GP can only prescribe with the Pain Clinic consultant’s approval.

[Ellababy1]

Hi Lobo, I’m sorry that you are going through this. I understand completely how not being listened to leads to feeling anxious and depressed. Having increased pain and not knowing why makes me feel frightened and then anxious. May I suggest you contact the Patient Advice and Liason Service (PALS) if you feel you are not being listened to? You can find how to access them via NHS inform. Sorry I tried to post the link but couldn’t.

I also found doing a pain management course very useful. They don’t say it’s all in our heads. I find they validate my pain but find ways of coping.

All the best.

[Downinil in reply to Ellababy1]

You would get more responses from others if you lock your post.

[Downinil]

I’m not in the UK but there are experienced medical professional patient advocates who are dedicated to helping patients navigate the healthcare system which is more of a mess than ever. Can you look into something like that there? These are physicians as well as some other experienced medical providers who know how to manage it.