Tips for dealing with people in pain

I'm taking this from a Facebook group. The author is apparently unknown. It's highly relevant to myself, as I am sure it is to many M.E.  and Fibro patients. For me it's Hypermobility that causes me the most pain though, so point 11 is particularly poignant.

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening
and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.

5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.

6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.

Pain is a pain in the everything.

Originally, I was prescribed Tramadol four times a day. I found that Tramadol keeps me awake though, so I reduced this dose to three times a day. This of course meant that I needed a different pain killer at night. I was prescribed Gabapentin by my specialist, last year.

It worked well to start with, but over the year it's diminished. Rather than increase the dose I requested, last week, to change to a more commonly used medication; Amitryptiline. He had no problem with this, but along with everything else he forgot to do, he forgot to write the prescription for this. (I hasten to add that this was NOT Dr Patel at the George Eliot). I left a note for my GP on the way home from the specialist appointment, telling him that I now had no pain medication for night-time, asking him if he could write the prescription for Amitryptiline for me. It's a commonly used drug, one which he's prescribed for me before under different circumstances.

So, I expected to spend the weekend without pain medication. Come Monday though, there was no prescription for me, and of course I can't get an appointment with, or speak with, my GP about it for weeks.

At the same time, of course, my Tramadol is running low. So I put in a request for a repeat of Tramadol on Monday, too. For some reason it seems particularly difficult to get a repeat of Tramadol. I don't know why it's so controversial. I've been assured that it isn't the cost of the drug. So, because I know it takes ages for the Tramadol prescription to come through, I've reduced the dose of Tramadol, to twice a day.

So, for a week now, I've been on less than half the pain medication my body has become accustomed to. It's very easy to say that I'm not addicted to these pain medications. I'm not ... not specifically addicted to Tramadol and Gabapentin, anyway. However, my body now requires pain relief of some sort. Last time something similar happened, I sought relief from Codeine Plus, or something like that, which helped a little. I only have Ibuprofen available at the moment though, which doesn't seem to do much at all.

So, I AM IN PAIN. I have a stabbing pain straight through my head (withdrawal no doubt). My entire body feels horrible. Obviously, the pain that the medications help with has come back with a vengeance. But, my body feels like it's starving, too, an experience I have never desired to repeat. Standing up feels uncomfortable, as if I'm unable to breath. Yet my breathing is unaffected.

I can't remain in one position for more than a few minutes, but I cannot explain why. Nothing feels right. This is the hypermobility. Before taking pain medication I was used to this feeling, and hadn't even realised I was in such significant discomfort. Every joint in my body feels ... loose. I can feel each tiny movement, some feel like they're grating, some feel like they're swimming. Subluxations have become a lot more common throughout this period of pain and discomfort.

And of course, with pain and discomfort comes the lack of sleep.

I'm so tired of fighting to live a normal life. Not just striving, but fighting the NHS and DWP. I have to argue my case over and over and over again, to get the simplest of things. This medication change is just one example, among many. I do at least have a GP who is working with me now, despite it feeling as if he's doing it so slowly. I've been ill since 2002: This is the first time someone is taking me seriously.

See the Invisible

When you tell someone that you have M.E., most people tell you that they knew someone who had it, who had got better. Presumably most of these people are mistaken, or they all knew the same handful of people, since the rate of recovery is extremely low. Having said that, if people see you leaving the house, they presume you are better. If you fail to mention M.E. every time you see them, they presume you are better. Most people just generally assume that M.E. is a mild condition, which most people recover from with ease.

It is not. 

I've actually had people ask me why they don't see any of these really really sick people. It seems a really dumb question. It actually says quite a lot about the image M.E. has, rather than those people being particularly dumb. For example, if you assume you have flu when you actually have a cold, then you can't understand why others with the flu are throwing up, sweating hot and cold etc. You understand? It's the same with M.E.; it is NOT this mild affliction that the public have assumed it to be. The people you have known, or do know, who have M.E., particularly if you've not met them online, are most likely to be very mild cases of the syndrome.

The serious cases, those with 'moderate' or 'severe' M.E. are seldom seen. Those with extremely severe cases often can't even use a computer, so you won't even meet them online. Imagine that all you can cope with is lying in a dark room, in silence, every movement hurts. You feel constantly nauseous. Your skin burns, freezes, and itches, for no reason. You can tolerate few foods, so have either been losing or gaining weight for the duration of your illness. You practically rattle from the amount of medication you're on. Your limbs feel as if they have weights on them, and you can't tell whether you're holding something or not as your hands are not only in considerable pain, but are frequently numb too. Can you imagine how totally isolated these people feel? What are they to hope for?

A friend of mine, has been in so much pain that she has not even been able to talk. She just discovered that she can talk again, so to celebrate she made a small video. It's extremely illuminating. Please, view it. You will start to understand where the invisible sufferers are, what it is like for them:

Hello, ummm. Oh, I've made this message about three times, this video, and I have managed to cry all the way through. I am so distressed today, and I am so on fire, and I'm so shaky, and generally scared by what's happening. It's also a very very personal video, and I promised always to be very honest with you, but it's quite hard, coz the British English girl gets all sort of .. she wants to hide! Also I am fully aware of the irony of making a message like this, when I look like the wreck of the ##. But, you know, I'm sure I would scrub up all right, honestly, with .. uh ... a couple of ship loads of make up, and a hair brush would be a good start!

Anyway, the thing that I wanted to say, was that, I'm very afraid of dying. I think about it all the time. Ummm, the pain is so unendurable, and so constant, that in some ways there isn't any reason to be afraid of dying, because it would be an ending to something that is, on a daily basis, unendurable. And everyone who has M.E., is enduring the unendurable all the time. And we find things to laugh about, and we have each others, and we have our families and things like that, but it doesn't take away that the pain is constant and unrelenting and bit of a spiteful bully really.

And, and, I think about dying, and it it it terrifies me because I feel like I'm unfinished. I feel like there is so much of my life that I haven't lived yet. I got ill at 12, and was housebound by 15. I'd like to go to university. I'd like to travel, and I'd like to kiss boys(!), and I'd like to hug my friends, and to learn to fly a plane, and go up in a hot air balloon. I'd like to ride horses, I'd like to write books, I'm mean there's just so much I want to do. And life is so beautiful. The idea of not getting to actually live it is quite heartbreaking. But, when it's really really bad, I think .. well I do believe in heaven. I would probably do all of those things in heaven, except for kissing boys. And, I can't tell you what a heartache it is to think that I might die before I fall in love, before I ever really get to kiss someone. I mean I have kissed people, but it was absolutely disastrous *laugh*. Well, perhaps I shouldn't say that in case they watch this! But, it was not a fairy tale.

And, I've never danced close to someone who really matters, and no one's ever fallen in love with me, or been tender with me, or made love to me, or any of those things. And it feels like such a heartbreak to me, that I may never get those things. And, when I'm in my bed, and the fire is everywhere, even breathing becomes a mission, that's often something I think about! I think "I can't die, I can't die without knowing what all those things feel like", and I hate the idea that, in this world, because of the way doctors are neglecting people with M.E., there are hundreds, if not thousands, of young people, dying without having such ordinary and beautiful things.

I really really don't want to be one of them. But, even if I am, there are others going through it too. I mean, none of them would want to be one of the ones who didn't get those things. And it just seems so appalling to me that so little is being done, when life is so wonderful, and we would have every opportunity to live it if we weren't ill.

Frustrations; Fibromyalgia has changed my life

This friend of mine has M.E. and Fibro. She struggles every day, and it's heart breaking to watch.

I can't walk without walking sticks, I can't cook a meal for myself as its too painful to stand to prepare it and the pots and pans are too heavy for me. My memory is so bad I forget who I am on a regular basis and have caused accidents on many occasions due to forgetting I had left a tap running, or food cooking. I spend a lot of time sleeping, badly, and still wake up feeling like I haven't slept in months. I have pain in every single joint in my body and am constantly exhausted.

I have Fibromyalgia and it's changed my life completely! Yet still I keep on fighting! The support of my friends and family is sometimes the only thing that keeps me fighting and I love you all for it! XXX

Frustrations; how long have you got?

When I asked one of my friends with M.E. what her frustrations were, this was her response:

"Have you got 3 weeks to read it lol? Its the most frustrating illness I've ever come across. You can't plan, you feel like you're living on luck, you're in pain every day, getting benefits to which you should be entitled to is luck of the draw, you fight to get better which makes you feel worse, you feel useless when you can't even make a meal or string a sentence together. If you have a 'good day' (which is a term I don't like as I am rarely symptom free) its frustrating to try and not be 'normal' as you know you'll pay for it over the next few days. You worry about what people think if they see you out doing something most others take for granted like shopping as to other people you look 'normal' and don't look ill. Its difficult for people to understand how you feel...and if one more person says "Oh, I get tired too..I just....blah blah blah...you should try that" I'll possibly use some of my precious energy in punching them...if the pain in my arms allow it!!!"

FM v M.E., what's the difference?

Last year I was diagnosed with Fibromyalgia. My previous GP had sent me to a rheumatologist, desperately seeking a specialist we could use to write me a statement for the DWP, as they would not accept anything written by him. The rheumatologist I saw was confused as to why I was referred to her, despite my explaining that there were no M.E. specialists in our area. My GP had hoped she would either be able to help or refer me further afield. (He eventually did this himself, as we know from previous blog posts). I only had one appointment with this rheumatologist. She diagnosed me with both Fibromylagia (FM) and hypermobility, and referred me for physiotherapy. She didn't explain to me what either condition means. My question ever since seeing her has been "What is the difference between FM and M.E.". No one, until today, has been able to give me an answer. I have several friends (all in the UK) who have the diagnosis of both, but none of them know the difference, and all identify most with the diagnosis they received first.

Today, a friend in the US, pointed me towards this page.

"A lot of people - even doctors - want to lump fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME) together, believing they're different manifestations of the same underlying problem. [...]

Similarities Between FM & CFS/ME

• Pain
• Fatigue
• Sleep disorders
• Irritable bowel syndrome symptoms
• Chronic headaches
• Association with Temporomandibular Joint Syndrome (TMJ)
• Cognitive or memory impairment
• Dizziness
• Impaired coordination

[...] When you look deeper, you discover that FM is linked to pain states such as hyperalgesia (pain amplification) and allodynia (pain from a typically non-painful source). CFS/ME, meanwhile, is associated with muscle aches like what you get with the flu. Also, not everyone with CFS/ME has pain.

[...] research shows that people with CFS/ME have unique fatigue states. The same has not been found about FM, and not everyone with FM has fatigue.

The types of unrefreshing sleep are vastly different, as well. People with CFS/ME may sleep most of the time, yet never feel rested. So far, researchers have been unable to identify any actual sleep disorders in CFS/ME, but they have found abnormal sleep patterns. FM, on the other hand, is generally characterized by one or more recognized sleep disorders as well as abnormal sleep rhythms. In many, the sleep disorders pre-date FM. Generally, those with FM get very little sleep.

When it comes to exercise, which causes symptom flares or "crashes" in both conditions, studies link the reaction to different physiological processes, including low growth hormone in FM and abnormal heart rhythms and lactic acid processing in CFS/ME.

The presence of central sensitization puts these conditions in the same overall category, but it's not unique to these illnesses.

Differences Between FM & CFS/ME

One key difference, when it comes to a diagnosis, is which symptom is worst, pain or fatigue. The diagnosis could also be influenced by whether your doctor is more familiar with the American College of Rheumatology's criteria for FM or the CDC's guidelines for CFS/ME.

However, experts have found some significant differences.

• Greater immune dysfunction in CFS/ME
• Abnormal nerve response in FM
• Stress-system (HPA axis) abnormalities predominantly from the adrenal glands in CFS/ME and the hypothalamus in FM
• FM patients have abnormal levels of a cellular chemical called substance P (which transmits pain signals), this level appears to be normal in CFS/ME patients.
• CFS/ME patients often have high levels of a cellular antiviral enzyme called RNase L, while the level is normal in FM patients.
• CFS/ME diagnostic criteria include low-grade fever and sore throat, FM criteria do not.
• The onset of FM frequently is traced to a physical or emotional trauma. The pain of FM usually gets better with heat and massage, while CFS/ME pain doesn't.
• Elevated pro-inflammatory cytokines in CFS/ME, and sometimes elevated anti-inflammatory cytokines in FM.
• FM has generally not been connected with viral and bacterial infections (with a few exceptions, such as mycoplasma and parvovirus B19)
• CFS/ME has occurred in epidemics, but none have been reported for FM
• FM is not thought to ever be progressive or life-threatening (as CFS/ME can be in rare cases)
• FM does not usually cause severe immune dysfunction, neurological symptoms and exercise intolerance
• CFS/ME usually does not cause allodynia (exaggerated response to pain: non-painful stimuli experienced as painful)
• Diagnosis of FM requires tender points (painful areas in the muscle that occur in certain places)
• CFS/ME tends to begin after flu-like symptoms and may be linked to a virus
• CFS/ME patients often have high levels of a cellular antiviral enzyme called RNase L, while the level is normal in FM patients
• CFS/ME diagnostic criteria include low-grade fever and sore throat, while FM criteria do not
• People with FM have tender points and abnormal levels of a cellular chemical called substance P (which transmits pain signals), and this level appears to be normal in those with CFS/ME
• Meanwhile, the onset of FM frequently is traced to a physical or emotional trauma. The pain of FM gets better with heat and massage, while the pain of CFS/ME does not."

I am interested to read at the beginning of the page that many doctors lump FM and M.E. together, believing they stem from the same cause. Every time I talked to anyone about the difference between FM and M.E. I was hearing that the two conditions have the same symptoms, and onset even seems to be similar; as such I had also come to the conclusion that they were one and the same.

I think, but cannot tell for certain, that this website may be American. The reason I say this is that my experience has been that when I suggest to doctors and other medical professionals that FM and M.E. are the same condition they react very negatively. Since being diagnosed with FM, medical professionals have taken me more seriously than they previously did; they tend to dismiss my diagnosis of M.E., but pay attention to FM. My understanding is that in the US, they are given about equal attention, though unfortunately both being dismissed by many medical professionals. I believe medical opinion of M.E. in the UK is far more negative than that of FM, because of the affect Dr Wessely has had, whereas the profession in the US has not had that influence. Wessely has not given the same attention to FM that he has to M.E., which may be why FM is taken more seriously. And may be why doctors look at me derisively when I ask if the two conditions are one and the same.

As the article suggests, I honestly do get very confused when trying to describe the pain I experience. A friend of mine recently asked me to describe FM pain to her because she is concerned she is developing it on top of her M.E.. I struggle with hypermobility pain, sciatica, other back pain, M.E. pain, and supposedly FM pain, and I honestly cannot tell you which is which a lot of the time.

I've experienced quite extreme pain for as long as I can remember. As a teenager I struggled with pain in my joints and throughout my legs, sometimes my arms too. The pain in my legs was sometimes so severe that I could not walk. I learnt many years later that the pain in my legs and arms was because of problems with my back. I learnt last year that the pain in my joints is due to being hypermobile. Both were dismissed by medical professionals as being growing pains. If you read further into the FM/CFS/ME Resources website you read of many patients with FM being told by medical professionals that they don't have any clinical signs of pain. This has lead me to wonder whether I actually had FM or M.E. many years before they hit me properly.

I had concluded months ago that the rheumatologist was incorrect to diagnose me with FM. The reason for this was that she seemed to do so upon hearing that I had pain in muscles. She seemed unaware of what tender points were and did not ask me about them. Plus she seemed to simply dismiss M.E. as irrelevant. I did not think that half an hours consultation was adequate for diagnosing something as severe, with such implications, as FM. Having read this document I now believe I am correct. I do not think I have FM. I cannot indicate tender points for the pain I have. I would describe it as being in my muscles, feeling like the bone is bruised. Sometimes it hits the exact same spots in my muscles; I can hit that spot, as if to give myself a dead leg / arm, and the pain will go temporarily. Other times the pain will simply radiate around the muscles. I had previously thought that TMJ (Temporomandibular Joint Syndrome) was only associated with FM. I have it, as such it was in my mind, my only connection to FM, but now having read that people with M.E. suffer it also, I shall dismiss that thought. Finally, the rheumatologist did not test for abnormal nerve response, did not test my cellular substance P levels, did not test for elevated anti-inflammatory cytokines, etc etc.

My conclusion is that I will be taking this document to my new GP and asking them to remove the diagnosis of FM from my records. While it has had be taken more seriously, had me receive medication that is helping me which I would not otherwise have received, and probably would have the DWP taking me more seriously, if it turns out that FM and M.E. are completely different conditions at some point in the future, I would rather that my medical records were accurate. I would also like to show the 'system' that I am not a hypochondriac collecting diagnoses.

Sunday 13th June 2011

My body sucks.

Woke up this morning at about 10am. I tried to be quiet, as I didn't want to wake Trudie. Once I'm awake I'm awake though, so it was a bit of a struggle. I can't actually remember clearly the process of this morning, just remember lying there trying not to breathe, but then having an allergic reaction to something so having to get some water to take anti histamines with. My legs didn't seem to be collapsing so much when I stood up to do so, which was good, but as soon as I stood up I had shooting pains all the way up my legs. I've spent the whole day with deep muscle pain throughout them. I try massaging my legs, but can't press hard enough to make it go away, and just end up bruising myself instead. Or at least it feels like I'm bruising them. It hurts!

Bev and Trudie played with ferrets for a bit, so I took a sneaky nap. I actually zonked out pretty convincingly. I hardly ever sleep deeply. Shame it didn't last long.

Mark and I took Trudie home. Mark drove obviously; very little chance of me driving at the moment. The seat was leaning a little forward; Mark had put it that way so that Trudie could lie down more easily in the back. But the angle of the chair was hurting my back, which in turn was making me grumpy and tired. And Mark was trying to hold a conversation with me. I hope my replies to him were making sense, it was very hard to focus.

Got back, ate chicken, fell asleep. I was woken up by a text message at 9pm. I hate being woken up artificially as it renders the rest I was having null. Rest only seems to count for me when I allow it to begin and end of it's own accord. I feel like a groggy, grumpy, pain infected lump of uselessness. I'm so sick of this illness. I want it to end. I want to move on with my life. Be useful to someone. I know it's probably a stupid worry at this point, but I'm really worried that my stupid illness, and this crash in particular will affect things with G. I don't want to scare him away :(