Pain - where my pain comes from!

[does-the-NHS-work]

My initial visit to the GP was as a result of Pain, this was the first thing I noticed.

From the moment I got out of bed in my mid 40's I could not stand on my feet, the nearest experience I had faced previously in my life was glandular fever in my teens. (I have spoken with other fibro individuals who also had glandular fever as a child )?

I spoke with my GP and tests began, MRI, radiography, x-rays, blood tests a lot of different tests and examinations and what they concluded was I have psoriatic arthritis.

This is similar to rheumatoid arthritis in so much it is an autoimmune condition, (in simple terms, your body is attacking itself, over reactive, amongst other things they try to supress your white blood cells to counter balance.) you do get pain, you also get psoriasis, visually you can see it on your body. The marker that doctors use to diagnose autoimmune in general is Inflammation which can be seen with a blood test. (I had a fraction of inflammation)

I said to the specialist one day, why am I in so much pain, yet no inflammation in my joints, (common with psoriatic arthritis, happens in different joints across the body) this is where the pain normally occurs. They said this can be normal with psoriatic arthritis. (10 yrs later I was diagnosed with Fibromyalgia)

The one thing I may have not translated to my GP was my pain was like surface, not joint pain, more tissue, muscular pain, nerve pain, tension pain, similar pain to gland pain, like clenching your fist and letting go, the pain aches all over your hand, My pain feels like I am holding parts of my body in a suspension of tightness, until I let go.

As you may know from my other posts, I started to work it out, work out why I was tense, tight, uptight a lot of the time, as we all know with fibro the very condition feeds the body with more, you start to fight the fight, there seems no way out.

You see, my pain is nerve pain it comes from the central nervous system in my body, I thought so what drives the central nervous system - It is my brain, my mind. So I thought what is going on in my mind to cause my central nervous system to attack my body with pain.

This was the start of my recovery, this very understanding was the start for me to understand my fibromyalgia syndrome. (There is a long way to go yet!) I will put that in another post.

[Hidden]

This sounds so familiar to me, my partner is suffering terrible. Have you had covid ? Have you had your B12 tested ? Have you had flu/covid jab?

Had to go private ... inflammation of the spinal cord.

Please get more tests

[Dizzytwo in reply to Hidden]

Hi there, fibro is not known to cause inflammation.

[does-the-NHS-work in reply to Dizzytwo]

Yes, you are correct, thanks for highlighting.

that is the very point. fibromyalgia is not an autoimmune condition. hence I received a diagnosis for psoriatic arthritis as I had a very, very slight inflammation maker that sent them off the cent!

this is not to say I do not have psoriatic arthritis as we know coexisting conditions are extremely common.

problem is I have a central nervous system condition too. I have posted many time the need for individuals to not stop at the first diagnosis, as invariably there may be other conditions hanging about too.

Hope this helps others.

[Greyt in reply to does-the-NHS-work]

I will be very interested to hear your future posts … yes it’s nerve pain , wrong messages going from nerve to brain and back again as I have heard.

[Hidden in reply to Dizzytwo]

I suppose it depends how a doctor interprets fibro,Daughter in law had all symptoms labelled fibro, got her to get b12 tested very low. Now after treatment back working. Nothing wrong in getting tested !!

[Dizzytwo in reply to Hidden]

Hi there, thats one of the problems with fibro it has many characteristics of other health issues.

So It would be natural to think if your daughter was treated for low B12 and felt better then it may not have been fibro.

I also was treated for low B12 but unfortunately it made no difference to my fibro.

Most GPs will take a full blood count when looking to rule other problems out. which as a norm will include include things like B12 before making a diagnosis of fibro Obviously this never happened in your daughter inlaws case.

I am glad to hear she got tested and hope she continues to improve.

[Hidden in reply to Dizzytwo]

B12 some how is not included in full blood count !!

[Dizzytwo in reply to Hidden]

Again I suppose it all depends on the GP I know mine was!!!

[Hidden in reply to Dizzytwo]

We are all not blessed with a good G.P. sadly.

Even Gps cant agree !!! Lol

[ShelWhitt in reply to Hidden]

You are so right. In fact, in our health centre, we can no longer get a GP appointment in less than two weeks and even then you are limited to a couple of dates, and if you are lucky a choice from two doctors. So, If you do manage to get an appointment you have to grab whoever is available, and to be honest, it is not worth the effort. Prior to covid I had been seeing the same doctor on a regular basis and she knew my history. I have had very little success with medication and it was generally for more a less a check up. I saw told her of any new symptoms; she would check me out, and I had regular blood tests, plus also regular thyroid blood tests, as my hashimotos also flared up periodically, and even though things haven't improved, at least I felt reassured that nothing else sinister was going on, which helped a lot with my stress and anxiety. Sadly, since covid started, I no longer have that luxury, and as I am also carer for my husband with several chronic conditions including dementia and COPD , my mental health is suffering along with thousands of others. It is very stressful but we have had to accept that this is now the normal and things are never going back to the way they were. As an aside I had a letter yesterday from my local pharmacy advising my to book in for my annual flu jab. This is a first also, as we have always previously had them at our local health centre. Sorry for the rant, but Ineeded the release valve! Thanks for listening.

[Hidden in reply to ShelWhitt]

I understand your frustration, and believe me when I say we have to do all we can to get change.Since November last year my hubby had been crippled (previously walking 30 miles a week on no medication at all gardening)

AMbulance said in too much Pain to take him, doctors throwing smarties at him. Gone private MRI scan, very very serious.. could be crippled for life. Hopefully will get answers today.

All started after flu or covid injection !!!

Look after yourselves take care

[ShelWhitt in reply to Hidden]

Thanks for responding Sallyann. Very scary . I had a bad first covid jab. Astra venica . 2nd and 3rd were ok. 4th was Pfzier and that was OK. (sorry about spelling I'm having a bad day I'm usually OK with spelling). At the moment I am just hanging in there, stress levels are up, as we are, (I am) having minor problems to deal with in the house. Something everyday. I now have a long list as I have had to put things back, as 2 weeks ago we had bad news. We've had to have central heating and boiler replaced. Anyhow it is now done. But we are not on benefits so it has been a big expense which we were not anticipating. I thought it was all ok. Only discovered after annual service. Was preparing for my 80th birthday, which was yesterday and I am absolutely shattered. Only just got the house straight again after all the disruption. It took longer than anticipated, so didn't manage to get my carpet cleaned. Fortunately having our family celebration next week as my grandson is away this weekend, but even so wasn't the restful build up I was hoping for and I know I will have to pay the price for the extra work I have been doing. I usually try my best to pace myself. Keeping my fingers crossed, and everything else. Anyway, thanks for listening and I hope your news is good.xx

[Hidden in reply to ShelWhitt]

Happy birthday for yesterday, repairs and replacements are essential, but don't they eat into the savings. We had to replace Oil tank as it had split in it... nearly £4,000.00 then you have to fill it !

Hope you have a lovely party, not too much to drink but enough to let yourself go!!!

Take care and look after yourself

[ShelWhitt in reply to Hidden]

Thank you so much. Had a lovely birthday. Don't drink anymore, but one glass of wine! Just about getting straight again, but as per usual I have done too much and am now paying the price .Have you got the results yet? Hopefully good news! Same to you. Take care and look after yourself!

[Hidden in reply to ShelWhitt]

No. Now have to have 2 x MRI scans and nerve steriod blockers nearly £3K. The NHS didnt even want to know. Ambulance said he was in to much pain to take him !!! If it does not work £12,000 +Operation ..... no guarantee..

Glad you enjoyed your party, now time to recuperate, legs up and rest.

All the best

[ShelWhitt in reply to Hidden]

So sorry for your bad news Sallyann. I don't know really what to say that can help. I am not wanting to pry and he does sound to be suffering so much. Is he able to do anything for himself. Is he in a wheelchair? You must be worried out of your mind. Let's hope the nerve steroid blockers work and he can get the treatment ASAP. £3K is a lot of money (around what we have just paid for our heating) but if you can afford it , you must give it a chance. A couple of years ago I paid privately (long story) to see a specialist for a skin cancer and have it removed. Doc had been treating me for excema for 2 years. That ended up costing around that money what with consultation, biopsy, operation and follow ups as couldn't see it myself and we are no longer driving so it was taxi journeys each time. then I had a folow up biopsy. To be honest the NHS is falling apart now. We were fortunate that we could pay, but the way things are going it doesn't look good. You have to be millionnaires or on benefits now. Us former workers with savings fall through the cracks. Sorry for moaning, I do get carried away sometimes. Try to stay positive and keep us informed how things go with your hubby. I was on a site a while ago and there was a Sallyann, so I was assuming it was you who was ill. Another bit of bad news today. It was on facebook that my former doctor has died. He retired a few years ago but must only be around 60. I did respect him as he listened and it was he who was my GP when I was diagnosed with fibromyalgia around 12 years ago. RIP Dr. Scorah. Take care and we are thinking of you. xx

[Hidden in reply to ShelWhitt]

Thank you for your kind words. The situation in this country could not be worse at the moment.Sad about your old doctor. We have the determination to make the best of a bad situation, we were not raised in the fifties and sixties to not know about the hard times. We have far more resilience about us than the snowflake generation, who expect everything thrown at there feet.

Hubby was Orphaned at two years of age, mother dying from breast cancer, So he has had harder times than me being brought up in a home in the forties. We will survive because we have seen the bad times and have each other. We have to wait and see what happens. I am not sure that sallyann was me, I do suffered from Pernicous Anemia, but I am able bodied NOW. Not the spritely 30 year old I was once. Your mention your treatment for skin cancer and going private, Today millions are suffering and cannot afford the luxury we have in going private. We are like you, not rich just enough in a safety net to pay for the unexpected, through

Hard work and squirelling away the odd amount.

It's been lovely talking to you, and your comments most appreciated.

[ShelWhitt in reply to Hidden]

Hin Sallyann. W are obviously around the same age and can relate to what you are saying about growing up in the 40s and 50s. We now both have chronic illnesses. Hubby has dementia which is getting worse, COPD and he can hardly walk. I have CKD, hypothyroidism and fibromyalgia. Plus we both have other medical problems, so it is not easy. I am obviously his unofficial carer. At the moment we are getting by but it is depressing knowing things are not going to improve. However, as my mum used to say, there is always someone worse off than you! Bless her. She lived to 97, whilst my dad died at 60. Even now I miss them both terribly. You are obviously managing to keep upbeat when things are so difficult, so well done!If you ever want to chat some more, I am not going anywhere , and if it helps, I am here! Take care!

[happytulip in reply to Dizzytwo]

It might have been an add on? In 15 years of medicine I've never seen a B12 done with an FBC unless it was an add on. It's generally done because someone is complaing of feeling very tired, or pins and needles or burning in hand and feet. You may have had iron overload studies done too.

[Dizzytwo in reply to happytulip]

You are correct it may have been an add on. All I know my GP has always done one for me. Maybe because I did have a low B12 in the past along with very low D vit and anemia. So maybe they are just been careful when I get a problem.

[happytulip in reply to Dizzytwo]

Yup, and it's important that they keep doing them for you, especially iron overload studies if you have been anaemic in the past and had low B12. I hope you have a supportive GP.

[Dizzytwo in reply to happytulip]

Right now I dont have a GP at all lol We are grateful for any GPs we can get at our surgery.

[happytulip in reply to Dizzytwo]

I'm very lucky as at my Surgery I have two Drs who can oversea my care which is essential for time management and continuation of care. Basically if I have anyone new by the time I have given them a background history half an hour has gone by which could have been given to someone else. I've left a message on your post about your sinuses. I seriously wish surgeries would invest in more nurse prescribers and more on-site paramedics.

[Greyt in reply to Dizzytwo]

Sounds a bit like our surgery .. haven’t seen my own doctor for over 2 years… He knew all the history as regards my fibromyalgia . Now the surgery seems full of locums .

[Dizzytwo in reply to Greyt]

I dont blame my surgery for lack of care. The fact is there is not enough GPs. Many are leaving or retiring and I guess many are not taking it up as a career.

[does-the-NHS-work in reply to Dizzytwo]

I too find Judgment an evil, making Judgement is easy and normally negative.

I do agree with you, it is important to be aware, the Fact is the NHS is under enormous strain, and us individuals believe they the NHS will give us the answers, Truth they probably will not.

Paying private for medical help was my saviour.

[Dizzytwo in reply to does-the-NHS-work]

Unfortunately not many people can afford to go private. Also the only diffrence I find is you get to see someone faster when paying.

What they tell you should be no different whether you have paid or not.

Baring in mind for the most part, the doctor you see privately also work for the NHS therefore the outcome of the consultation should be no different as I said above.

I am glad you have the means to have private treatment and you are finding it benificial 👍

[Maud-ie in reply to Greyt]

No clue who my named GP is! Mine retired early and three different HP's have been listed on my prescriptions over the last few years. Can't get appointments just a phone call from a nurse if I'm lucky. Tbh I can't be bothered any more. Every man/woman for himself!

[Maud-ie in reply to Maud-ie]

GP not HP like the brown sauce!

[happytulip in reply to Hidden]

that's because a full blood count looks at the breakdown of part of your immune system. A FBC is done on pretty much every patient that attends hospital unless it's a minor injury, and even then they may still need one. To do a B12 which is not generally related to basic function of the immune system would be a waste of an extortionate amount of money.

B12 helps the nervous system and contributes towards preventing some types of anaemia, it isn't a marker for infections. It would be a blood test that is requested if certain symptoms are experienced by a patient or if a patient has a diagnosis of a certain type of anaemia.

Hope that helps.

[Maud-ie in reply to Hidden]

It has to be tested separately

[Hidden in reply to Maud-ie]

Yes I Know, but how many people think when you have bloods test done it is included, therefore missing what might be a vital answer to peoples suffering.

[Maud-ie in reply to Hidden]

I agree but the extent of GPs interest generally very low

[Hidden in reply to Maud-ie]

I have learnt from my mistakes !!!I also found out My GP knew nothing about B12 deficiency .... So why would she order one !!

[Maud-ie in reply to Hidden]

Precisely!

[does-the-NHS-work in reply to Hidden]

Yes, B12 and all the jabs, my answer to my issues is largely due to my mental health, for me my physical health and symptoms are driven by my mind, my brain.

There is a theory that encompasses many different disciplines such as Yoga, many humans have adopted this philosophy, it is about the polyvagal theory.

[Hidden in reply to does-the-NHS-work]

Sorry, but your physical health is affecting your brain.If you are constantly in pain, then it affects how you think, dragging you down. Were you worse of after having covid/flu jab...... does B12 help.

Keep a diary.

Google is B12 an anti inflammatory !!

I will leave it there and wish you all the best

[does-the-NHS-work in reply to Hidden]

I agree it is a negative cycle of decline, physical affect mental health too, like having a tooth ache gets you down after a while.

No the covid/flue had no effects on me, well not that I noticed.

Good suggestion on the diary, I do, well a diary of sort, I started to make a note of 'Triggers' the things that made my symptoms, this again was where I started, it made sense and as I started to change my habits and behaviours so did my symptoms change too.

For me I am on the road to recovery, I cut out all the foods that were affecting me, stopped, yes literally stopped all relationship with the people who were affecting my mental state and things changed almost immediately.

Along with mindfulness, grounding techniques and meditation, my meds are to their lowest, my daily life is bags better,

[Hidden in reply to does-the-NHS-work]

Well done ! In several months you can look back in the diary and think ummmmmm was that really me, did that really happen. Keep going best wishes

[happytulip]

?? " The marker that doctors use to diagnose auto-immune in general is inflammation." This is VERY general. Inflammation can be caused by bacterial or viral infections, stress, injury or possibly medications to name a few.

The tests that a doctor would request if they suspected an auto-immune disease would be Anti-nuclear antibodies for a start. They wouldn't diagnosis an auto-immune condition on blood work that shows inflammation. In fact many people with auto-immune disease have entirely normal inflammation markers even though they can have inflammation that can be so bad that it involves vital organs. This is because they have such a deranged and dysfunctional immune system that there isn't an appropriate clinical immune response to match the symptoms.

[desquinn Partner Volunteer FMAUK Trustee in reply to happytulip]

When I found out that blood tests tend to be used by doctors to confirm a diagnosis but not to actually make a diagnosis I was surprised. You look at the constellation of symptoms and patient history and other aspects and then the test to get you either in the right area or out of the wrong area. You are trying to get to a point that Occam's razor applies and you can be fairly sure from what I understand it is going on with the patient. Then if treatments work your onto something

But Hickam's Dictum also applies..... A patient can have as many diseases as he damn well pleases So its complicated and hence why doctors and health professionals not only have a lot of training from books but from experiential training learning to not look for zebras and then being on the lookout for them when all else fails and they have that experience under their belt.

As you know happytulip crp/esr are blunt tools and as you have explained above ANA is crucial for some conditions but also a problematic test. Inflammation is a marker and complicated in a number of conditions with brain inflammation causing some confusion or talking points within fibro research as well.

going back to blood tests there are conditions like non serological rheumatoid arthritis where the test does not find it but you have it nonetheless.

Thanks for your post.

[happytulip in reply to desquinn]

Yes, I agree. Understanding blood work is a very complex skill and takes years to master. Infact once you think the penny has dropped, you learn something else and it gets you questioning things again. I would love to learn more about brain inflammation and it's markers as I know I get inflammation as I respond to steroids but I also get typical brain fog. My own experience of brain inflammation is far more acute and dangerous than regular brain fog and as I live alone I have to rely on family and friends picking up on unusual behaviour which can be dangerous if left untreated. I digress.

I'm acutely aware of the sero-negative ANA debate after being told for a good 32 years that all was well in my world until I was diagnosed with ANA-ve Lupus. It's what I like to call a "bang head here," arguement with the medical profession. I seem to spend a lot of time explaining to newly diagnosed peeps that yes you can have a negative ANA with an auto-immune disease. "The people who need educating on this are the medical world," that came from my Consultant!

As you have said just because your ANA is negative doesn't mean you don't have certain AI conditions, yet if you do have a position ANA it doesn't necessarily mean that you do. I prefer the doctor who can throw their arms up in the air and says "we still don't know enough about the immune system to fully understand it. There are 200 strands to the immune system that we know of......so far." That doctor has my time and respect as they are open minded and willing to consider patients as individuals with individual symptoms and possible immune dysregulation.

One thing in your reply about doing bloods to confirm a diagnosis, interesting, I was always taught you do a test or procedure as a test of exclusion. For example a patient with certain symptoms of chest pain has a D-Dimer done to exclude a diagnosis of a pulmonary embolism. You can prove that they don't have a clot because they don't have an elevated D-Dimer in the 1000s. But I guess you can say that you could confirm a heart attack on bloods so tomato, tomatoe or whatever they say.

Interesting discussion. 👍

[desquinn Partner Volunteer FMAUK Trustee in reply to happytulip]

I think you are right and the conversation was in the frame "take this test to find out if you have X" but they were framing it as I think from what I know you have X so lets do a test to confirm your suspicions. That could be to rule you in or out of the right area but with results that are off the "scale" that is in use then it is only when the patient gets better from treatment that you will be fairly sure you are right

On support interactions I often say that we the patient are a variable that makes it difficult for a GP to know what to do as we are all different. But this in itself is very simplistic as we are a vast collection of variables that can change over time depending on internal environment and external factors as well. The joys..... as an IT person I see a lot of similarities and splitting the problem till you are in the right area. But it is easier for us to swap a leg or an arm

[happytulip in reply to desquinn]

We are a variable to a GP indeed which is why I believed any patient with a chronic illness or an illness that is difficult to manage should have the same GP for continuity of care. It allows the GP to get to know their patient and their variables as you describe them. Too many people get moved from one GP to the next without seeing the same person when continuation is needed. My care improvemed dramatically when my named GP insisted on taking over my care.

[does-the-NHS-work in reply to happytulip]

Hi happytulip,

I was unlucky with my GP, she just did not listen to me, I said on occasions there is something else, she said "what do you think it is?" She, seemed helpful enough, we had a good relationship, friendly helpful but not very good at diagnosis, she would prescribe me practically any drug I asked for within the medical guidelines for my condition, yet nothing worked.

I see on this forum, endless comments of individuals trying antidepressants, one after the other and feel I was there once!

After many years I am pleased to say I paid privately and here again I had 3 independent professional medics and they all came up with the same answer, I am pleased you have what sounds to be well qualified, experienced GP as I feel it is a bit of the luck of the draw.

[desquinn Partner Volunteer FMAUK Trustee in reply to does-the-NHS-work]

I am glad you are having results with your approach but it is worrisome to consider your new found vision to be correct and others to be wrong. There is evidence (study and results based) for antidepressants working for lots of people albeit it is a journey to get to a med that works for the individual. If your gp had prescribed the med you asked for at one point and that was very helpful for your condition then your opinion would have possibly been different.

I have seen many people over the years that have become evangelical or the ardent non smoker after giving up that then proclaims their solution as the way and the light and all others false gods

I am making light of this and not taking shots at your new found solutions per se but it is a particular archetype to avoid.

However, reading both your view and happytulip I cannot agree more that the doctor that you end up with is a bit of luck but also the most important relationship you can make on this journey. But that partnership depends on the variables that both people can bring. A great doctor can be seen as one from one of their patients and as a failure by another not just on the results based aspect I am alluding to above but also on personality types and making the right call at the right time for them.

[happytulip in reply to does-the-NHS-work]

It's totally luck of the draw. Don't get me wrong, I've had plenty of bad experiences too. It took 32 years to get my primary diagnosis which is far to long, especially as it was very obvious. I took a lot of unhelpful comments from GPnand was often told that I needed anti-depressants. It was only that I became acutely unwell and spent months in hospital that I was taken seriously. Since then I have formed a good clinical support team and I recognise how lucky I am. But the delay in initial care has given me problems that I would not have had if a diagnosis was made sooner.

[Maud-ie]

I am on that mindset route too!

[JayCeon]

Hi there -

I also realized that I can resolve certain local pain types, especially jaw pain, by using various relaxing methods. Also that relaxed isn't relaxed, you can go deeper, and deeper, like onion rings. I'm usually much more relaxed than I used to be. GABA as I've often said helps me with that too. And if were more anxious I'd go on an anti-anxiety diet. However I got most of my local pains down with stretches, exercises and acupressure, not with relaxation. So this aspect of tenseness is only a small part of fibro. No matter, all the small parts together can get a bit bigger. And minimizing local pains greatly increases my quality of life.

However most of my symptoms have nothing to do with tenseness and what I've been able to influence has been with supps and preventing tons of triggers.

So I'm wondering firstly how much of your symptoms you've actually improved in this way. For me it's a bit less than 5%. In your case it always sounds as if you're optimistic that concentrating on only this is going to help you recover to a large extent. Why do you think this? Is this one route enough for you, or is it just your main one at the moment? Curious... I always work on many routes at the same time, until I see they're getting to their limits, and then continually find new ideas.