I have a mental illness and live with chronic pain. There is some deterioration in my spine but no other physical signs other than pain, weakness, down my left arm back both hips left leg into foot. It’s so bad that sometimes I use a wheelchair. I’m on butrans 20 patch, pregablin500mg a day, cocodamol, ibuprofen. Now I’m being told that my pain is psychosomatic. So how am I supposed to deal with it? Why do I have it? It feels so real, it’s not aches and pains, it’s fatigue, cloudy head, loss of sensation, weakness which causes me to drop stuff. The pain clinic says I have fybromyalgic spectrum pain but I don’t have fibromyalgia. Inflammatory blood test at gp came back normal. If I’m making this pain up how do I stop it?
Thanks
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Helenbolland
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Pain is such a complex subject. Everyone feels pain in different ways and react to different levels of pain.
Our bodies can get used to pain and we can get into a "cycle of pain" where signals of pain just go on - even after the cause gas gone. Think of phantom itches in cut off limbs.
The human brain is also complex and messages become habitual- this is where it gets complicated. On a psychological level pain is comfortable- we like the excuse and sympathy and minding. This creates a cycle which is extremely difficult to get out of.
Not saying this is your situation- we are all suffering- but it is excrutiatingly complex-- and sometimes we have to be very self appraising and self critical to appreciate just where we are.
I'll stop here , because it's a huge subject- but there are books out there describing all this. Ask you pain management team for recommendations.
Deterioration of your spine can cause pain. Pain and weakness such as you are describing could be related to it. Which part/s of the spine are affected? How many xrays and MRI scans have you had and what were the results.
Did your GP ever do any Thyroid blood tests for you? If there is no explanation for your weight gain - this is a classic symptom of Underactive Thyroid. Then again, it could be a side effect of a medication you are on?
You're not " making the pain up . . " you just need full and accurate diagnosis so that you can find out how to best deal with your medical conditions. It's what I call DIY NHS. Sadly we have to push for referals and investigations to find out what we've got.
Weight loss is helpful but that's easier said than done. Impossible with Hypothyroidism - but you haven't had a diagnosis yet have you? So don't know if your Thyroid is Underactive. If it is then it could be the root cause of many of your health problems.
Blood tests for inflammation markers coming back normal doesn't mean that you don't have medical conditions. Mine just came back normal and I have lots of Arthritis. Very advanced in C-Spine and top Thoraxic vertebrae. Fronts of both knee caps, both hips, Right shoulder and most likely other joints that haven't been xrayed or scanned yet !! Also got Meniscus tear on left knee. And numerous other conditions!
When did you last have blood tests to check your Kidneys and Liver function? To make sure your medication is not having an adverse effect on them?
I’ve had one MRI three years ago which showed deterioration and sanguinated discs in my thoracic and L5-S2 which corresponded to the impact points of an accident I had. He said it was similar to coal miners back. The rest of the pain has not been investigated. I had blood tests for inflammatory markers come back clear during a flare up in November. I have now been referred against my GPs advice, to the veterans pain clinic in London which I hope will be more hopeful.
I have had my thyroid tested several times by GP and consultant as my blood tests come back with very different results at times and then “normal” at other times. I do have full symptoms of under active thyroid but I wonder if it’s all in my head.
My weight is a huge problem. I’m 6 stone overweight, working with dietician has not helped and I am desperate for weight loss surgery and despite fitting the criteria I have been turned down as I am not diabetic or suffering from heart disease.
I know my liver was tested when I had my gall bladder out in September and it has previously been high. Nothing has ever been done about it so I assume it mustn’t be too bad.
I just feel like a huge fat fake and I get the impression that my doctor thinks I’m a time waster so I very rarely go to them now unless Its important.
Did your weight go on suddenly - for example when you had a cold or other infection?
I put on 5st over the years. I'd get sick with a chest infection for example and the weight would just go on. I'd get better start, getting fit again , start losing weight, then wham! Get a sore throat or chest infection - be ages recovering and the weight would just pile on. That's the Hashimoto's. Check if you've ever had the Antibodies tested (TPO and Tg) if not ask for them.
With Hashimoto's, regular Thyroid bloods can fluctuate. Mine did.
Also ask for the Vitamin D, Calcium, B12, Folate and Ferritin levels to be tested.
In 2008 my blood results were Hypothyroid - but no one told me. My Liver tests were out of range (or deranged Liver Function Tests as Gastroenterologist called it). They couldn't figure out what was causing this. (They should have looked at my Thyroid results !!)
In 2010 my Thyroid bloods came back 'Euthyroid ' / normal - so I was told Thyroid is OK. But it wasn't. Didn't have the Antibodies and FreeT3 tested till 2011. When I was finally family diagnosed with Hashimoto's Autoimmune Thyroiditis and Hypothyroidism.
I was advice for tramadol pain reliever for my chronic pain and it worked really well on me without any side-effects.Consult your doctor about it. Hopefully it will help you.
What you feel is real. Whatever you do, do not let anyone define your experience. How you deal with it is the same way you are dealing with it now! No person needs to talk you out of anything and if they do, tell them to stop! If you are in severe pain, you deserve to be treated as you are. I would also suggest you try some mindfulness / calming down routines to add to what you are doing. This increases self esteem and can help you with your pain. I said help, not cure.This is about standing up for your rights as a human being. Any problems.....get back to me.
Hi Dee, yes I have. They have suggested I do my own regular thyroid tests through the post and keep a score. However at the moment this is an expensive exercise for me and I wouldn’t be able to do it very often financially. I got hold of the list of recommended consultants but there were none in Scotland.
Low thyroid hormones, B12, folate, vitamin D, & other micronutrient deficiencies cause both mental & physical issues that you mention. Have you had full blood tests to ascertain whether you're lacking something essential? No amount of pain killers, anti-inflammatories, or anti-depressants, can replace the hormones & micronutrients our cells need to function effectively. Ask your GP to for blood tests to find the cause rather than dose you up with medication for the symptoms. Also ask your GP to refer you to your nearest pain management clinic &/or a pain psychologist for more help.
It's important for you to try to help yourself & eat a healthy diet, to see if this helps you feel any better. Try to exclude processed foods from your diet & include more fresh fruit & vegetables.
Taking chelated magnesium at bedtime with water may reduce your pain levels, or use a transdermal spray or a soak in an epsom salt bath.
I had a vitamin d test 6 years ago and it showed a deficiency but I don’t know how much. I’m in the process of moving GP as I feel I’m getting nowhere with my current one. Once it’s sorted I will ask for the tests.
NHS deficiency, & the usual prescription dose are very low. All our nutrients are important, & usually need to be at the higher not lower end of what the NHS considers normal range.
“Assessment and treatment of pain is often complex. The standard definition of pain is “whatever the experiencing person says it is, existing whenever the experiencing person says it does” (McCaffery, 1968, p.95).25 Oct 2011
A quote I was taught when doing my nurse training.
Quote it as it was used in health care training in the 1980s. McCaffery is the author of a nurse training manual and dealt with medical ethics around patient treatment. I try to get medical professionals to put themselves in my position. I hope you find someone who will listen to you properly. Maybe a change of gp is needed x
The ethics are the same... basically pain is what the patient says it is. The rest is somantics. I have Complex Regional Pain Syndrome with fibromyalgia so pain is constant. Although it does change. We’re all our own experts when it comes to our pain. Verbalising it or measuring it medically is the issue.
I have a condition that means I have pain signals being constantly sent to all parts of my body. I need a brain reboot. Next level of pain relief is Ketamine, but I just say Neigh 🤣
A mental health condition can effect your physical pain, and physical pain can effect you mental health. It's a catch 22 situation. I have both, and know how one effects the other.
If you can access some counselling through your GP; (or you can self refer to some mental health charities) you'll find it beneficial to both your mental health and your pain. (free if you're in the UK)
don't know which part of the country you're in, but look up mental health charities. You can get in touch with them, and they'll see you without a referral from your GP.
I'm in Devon, and there's a mental health charity called Rethink who have helped me a great deal. No idea if it's in your area, but there are others who will help for free. Worth a try
You say: "I have a mental illness and live with chronic pain. There is some deterioration in my spine." You say: "Now I’m being told that my pain is psychosomatic."
You have a lot of work to do, most of which has to be done with no help from the NHS.
Look at the above web site. The NHS tends to ignore infections that they cannot see ie symptoms presented look similar to a particular checklist. Erythromycin is an antibiotic and one of the best anti-inflammatories around. Google "erythromycin anti inflammatory". Persuade your medical consultant to try you on a one week course and see what it does. It may help your condition.
See a McTimony Chiropractor. They can help with a second opinion. They will also help with the muscle tensions that generate pain and discomfort. This will cost money.
You have not said anything about your mental illness but you write reasonably well so it may be possible to take actions that will help you manage things more effectively. Mental alertness and sleep is related. Pain and sleep is related. So more sleep is worth trying. Suggest a sleep of an hour or so late afternoon. See how effective or not that is. You are in the realm of investigating yourself. How do you react to things and how can I modify things to change what needs to change?
Gentle movement to prevent joints and muscles stiffening up is essential. Suggest yoga under a skilled teacher who can help you spot any movement issues. Note: the way we move and how we stand affects the emotions we feel. All emotions are felt in the body. The brain acts on the emotions we feel.
I engage in Alexander Technique and T'ai Chi. This may or may not be suitable for you at this stage because of mental health issues.
I engage in Meditation and mindfulness. Again because of mental health issues it may be too much for you. However you can search for a friendly Buddhist group who may be able to help move in the direction of meditation and mindfulness. There are church groups who can help. You need to find the right one for you. The religious traditions have been working with issues of mental health for thousands of years. The religious traditions I have mentioned will be useful for networking and finding the right people to help with your medical situation.
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