How can we be taken seriously with chronic pain ? - Page 2 — Scope | Disability forum
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How can we be taken seriously with chronic pain ?

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  • moffer61
    moffer61 Community member Posts: 1 Listener
    Hi there, I am 57, and for the past 9 years I have been struggling with pain. I have not worked for 4 years and that is my biggest problem as I have worked always and work is what I do. I have scoriatic arthritis, fibromyalgia, degenerative spinal disease, total right knee replacement, I had the bones removed from my toes on both feet as they were so clawed, I couldn't wear anything on my feet as it would rub the skin of the joints. I don't sleep deeply for more than 3 hours so I am constantly tired. All my joints are constantly in pain. Even the operations I had did not take away any of the pain. I have been to pain clinic 3 times. I have been discharged on one occasion for being in a really low mood, and then for being in too much pain to do the exercises they wanted me to do. So the last time I was told to go, I declined as I could not see any purpose as the reason I was going was the precise reasons they discharged me. They didn't seem to be interested in the fact that I was in awful pain despite not doing anything physical at all. So now I sit tired, in constant pain, depressed, constantly breaking down in floods of tears, not knowing how to deal with it all. I have a large collection of pills saved from all the changes in medication I have gone through. I often wonder what life would be with me not in it, but am to chicken to take all of the pills in case they don't work and I end up in a worse situation. I feel my wife doesn't understand what I am going through, as she is often away for hours on end at her friends, so I spend a lot of times day and night alone. I have mentioned she would be better off leaving and finding someone not ill. I constantly feel guilt and blame myself for being ill. I apologise for rambling on, but I feel I need to get things of my chest now and again.
  • colindunne
    colindunne Community member Posts: 20 Connected
    I only joined yesterday but already don’t feel as lonely as it makes you feel due to reading other people’s problems and now even though my condition is serious some of you have major problems of what I really do relate to and feel for you all.My pain is a constantly numb big left toe,pins and needles,liken it to an electric charge through my leg,constantly cold leg,involuntary twitching and extreme pain in any part of my left leg and lower back running basically down my sciatic nerve. The medication has wiped my memory out but they would say a lifetime of smoking cannabis has done that but I can assure you when I first started using gabapenten an zapain it was frightening because of the instant memory loss. I started using cannabis to help control my epilepsy when I was diagnosed aged 19 I’m now 51.I first used it recreationally but realised my fits had virtually stopped,coincidence or does it work who knows. I have read these threads and realise I am not being a **** and realise my symptoms and issues are exactly the same as a lot of you. I feel finished and don’t know what the future holds apart from the guarantee of permanent pain (chronic pain). I break down regularly and my self esteem is non existent it basically reduces you to feeling worthless and pointless going on.Like you Moffer61I am a chicken but constantly think of ending it due to the relentless pain,you are not alone and got to hope that one day with modern medicine making brilliant advances something may help.As for the pain clinic I have been told that my depression has to be sorted before they can see me,why I do not know.And this word psychosomatic makes you think you are putting it on orbit does me but if they mention that destructive word to me I drop my trousers and show them my gammy left leg wasting away and just look at them and repeat the word psychosomatic yeah sure.Dying to say listen it’s all in your head!!!Whilst I do get extremely low like we all do I live in hope.Hope this might help someone.Good luck everyone.
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    The accepted definition of CP is spending most or every day with pain levels unacceptable to normal functioning and with "bad days" suffering breakout or breakthrough pain for no real reason, given a steady movement / functioning level every day.

    However, the types of pain vary wildly from significant aches to searing burning terrors. Some people labelled with CP have very real and understood reasons for it, such as arthritis but it is possible for some people to test positive and visually have the same damage without being significantly affected. Likewise the visual comparison of spinal damage showing equal levels of damage yet one suffers agony and the other no significant discomfort.

    Sometimes it is fairly easy to control some versions of CP by inactivity which, by doctors standards, would therefore not strictly be classed as CP. Other times the reasons for the pain are not understood (conditions such as Fibromyalgia) and so should not really generate the pain levels they obviously do. Most CP is related to the nerves being damaged in some fashion. However, there are some muscular conditions (though not many) which can lead to constant nagging pain levels.

    For myself the bones in my spine are only very slightly out of line leading to the nerves dragging across the edges of the bones and generating very significant pain levels. So, from a sleeping and inactive situation, my pain levels are quite low (for me, around 2-3) but once I begin moving the pain grows to levels that feel like a small sharp knife has been inserted into the area and keeps moving about. Far worse though is the accumulation of nerve damage over a significant period (in my case 15 years since diagnosis). Once nerves are permanently damaged though they report burning pain that feels like the skin is literally being flayed from the bones or the feeling of burning petrol on the skin. Again an inactive period reduces the levels but any touching of the area of nerve damage (such as wearing light trousers) or low levels of movement (like leaving bed to go to the toilet 3 or 4 times a day can set it off again. Also, in my case, the number of discs / bones involved is increasing so the areas of CP and the areas of Neural damage increase significantly every 2-3 months. For example a month ago the area affected by neural damage extended from just above the ankle to just below the knee on the front of the right leg. Now in addition I have an area about 2 inches long just above the knee is now neurally damaged as is the underside of the right heel. The rest of the foot is either numb of tingling (jangling?) and the back of the calf and thigh plus the outside of the thigh is also numb / tingling. Any future deterioration would see an area of the numb / tingling to become pure neural pain at the rate of about 4 inches per year. Similar to toothache light touching is awfully painful but strong continuous pressure initially dampens the pain which then climbs to inordinate levels until the pressure is released (such as wearing socks / shoes). Nerve pain is also odd in that it takes 4 or 5 times as long for inactivity to reduce the levels down again as it did to cause it.

    There is one advantage to constant pain that doesn't apply to individual and correctable situations. After prolonged exposure to CP most sufferers discover how to "tune out" some of the pain reducing the level by 1 or 2 out of 10 because the body simply "gets used to it".Also, with ALL pain, there is a physical limit as to how much of the pain it is possible to suffer and so, once that point is reached, the brain gets "overloaded" and cannot feel any more. This overload point varies greatly from one person to another.

    My disagreement to the standard nurses question of "how much out of 10" is too relative to be useful. On one occasion, instead of suffering pain in my usual 4 or 5 places, I was suffering from ALL 13 possible places at the same time. Suffering pain usually raises the Blood Pressure quite a lot and means that the usual BP of 120 / 80 can rise to 160 / 100 (similar to a heavy gym workout to maximum acceptable activity levels). On that occasion though my BP soared to double (240 / 160) which would normally be lethal to most people and cause a brain bleed or significant internal haemorrhaging. Ofc to me it just made movement difficult  and did no damage at all, lol! That sort of effect simply cannot be scored out of 10 because the levels were impossible to judge and, by comparison, would make a bad toothache only a 3 if it was scored as a 10.

    Whilst I continued to walk and go out my normal out of 10 score was up to 5 or 6 with no significant impact on mobility unless I seriously aggravated the neural damage but, to someone not suffering CP, would be a complete movement stuffer such as my sister has when one of her slipped discs plays up. I know my pain levels are reduced by medication levels of opiates not far short of those given to terminal cancer patients but nerve pain is disproportionately higher than arthritic pain which is also significantly above muscular pain (as a general rule though there are always exceptions to any rule).

    Something that affects all sufferers of pain is covered by a comment by a person who first plated American Football and then went on to coach and finally commentate on the sport. Evidently it is very common for AF players to continue playing with a number of niggling injuries until finally something serious occurs. John Madden said that no matter how many different places hurt there was always one area that caught a players (persons) attention. That one area would appear to accumulate all the pain and the others fade and almost disappear (although they don't actually do so). In my case it has been the right shin (neural damage) which hurts all the time and even though there are usually 4 or 5 other places hurting I barely notice them until I rest and reduce the shin pain. I will say though that currently the small area just above the knee seems to be taking on that role.

    Does this help at all?

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • colindunne
    colindunne Community member Posts: 20 Connected
    Hi top kitten thanks for your information and sorry to hear that you suffer like that you must be exhausted as it’s so tiring trying to fight it. I have suffered for three years now and the one thing I can’t get away from is exhaustion,before my accident I was a healthy man and very active. I was a painter and decorator for a living but not now I’m a recluse.So hard to accept this situation.Thanks again 
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    Hi @colindunne, I have trophies for football, ten pin bowling, pool, darts and bridge (see the obvious reduction in activity? lol!) and have suffered CP for 15 years gradually losing mobility. I am now at the point that even walking around the house is virtually impossible all caused by nothing at all except excessive wear and tear of the spine. I really wish I could point to one incident being the cause.

    I worked in a factory chemical laboratory for 4 years and was fully trained in safety equipment and on the team for dealing with rtc chemical spills. I then spent 25 years in computing covering all possible activities within that. Then a year of "piece work" and a year of counting money for Securitas. I was always a hard worker and prepared to go the extra mile to make things work / keep things working even covering out of hours support 24 / 7 week in week out.

    To be restricted to a chair to watch TV and sleep in is an awful downgrade from a very active life for a husband, father and home provider.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • colindunne
    colindunne Community member Posts: 20 Connected
    Thanks TK it really is a bitter pill to swallow especially as I had no back problems before my accident (slip on wet floor)really struggling to accept it. I unfortunately am not really that academically minded and really enjoyed my job as a decorator and the thought of trying to learn something new with a terrible memory due to medication is daunting. Thanks again and although I am not and never have been religious I do pray to something,and wish you the best you can possibly be given your situation.
  • Zaracat4
    Zaracat4 Community member Posts: 4 Listener
    Hi Topkitten and everyone.
    i can relate to the horrible nerve pain when even light clothing sets the nerves off or a touch of light bed sheets.
    I found out it is chronic pain if it lasts longer than 3 months. 
    I was only in day surgery and woke up with leg pains ....I wasn't even operated on that area and have symptoms of a sacral spinal cord injury for the last eight years.
    The cps requires me to have full time care!,, 
    Really helpful to read everyone's posts and experiences and feel I am not on my own with this. Hard to talk to family about how I feel as they have enough on their plate caring for me.
  • ClaireSaul
    ClaireSaul Community member Posts: 92 Pioneering
    Hi all, just catching up with this chat having not been around for a while - various stresses(of the the young adult child variety) and flares of my EDS symptoms (like some of the people above) have caused my chronic pain to be out of control over the last couple of months.  I have found myself taking stronger opiates again for "acute on chronic pain" (dislocations!) - I say again as I had weaned myself off when I had my spinal cord stimulator fitted.  @Zaracat4 you are definitely not alone - but I know I have felt really isolated at times, particularly when you can't get out of the house, and when things have been really bad I can find it difficult to come here to give advice or join in.  @colindunne - I get your frustrations about an active life going down the plughole.....I was a nurse, a ward sister, and found myself medically retired 10 years ago at 39.  Devastating - particularly trying to care for a young family too. Glad @Topkitten has been able to give some fab advice.....and (as someone who used to teach others about pain control) I completely agree that asking for a score out of 10 is ridiculous!!! But I won't get going on that now....other chats and threads to catch up on.
    Claire Saul
    Chronic Pain Advisor
    Scope
    helpline@scope.org.uk
    scope.org.uk

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