Pregnancy Forums

Posted: 12 March 2008 at 11:40pm | IP Logged

I found this today and wanted to share it with you. Those of you with SPD or any chronic pain condition will understand this and may find it helpful to share it with your friends and family to help explain what you go though everyday. I found it to be very true - to me anyway.

• People with chronic pain don't mean to be unreliable.
• When feeling better we promise things and mean it, when in pain these goals seam unattainable.
• 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.
• 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 a lack of attention. So you may have to repeat a request, or write things down for a person with chronic pain.  The senses can overload while in pain. For example, noises that wouldn't normally bother you seem too much.
• Patience may seem short. It is normal to be depressed occasionally when you hurt.
• Pain can sometimes trigger psychological blocks, (usually very temporary).
• When in pain, a small task, like hanging out the laundry, can seem like a huge task. An hour later the same job may be quite OK.
• Pain can come on fairly quickly and unexpectedly. Pain sometimes lessens after a short rest.
• Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a  cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain. 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.
• 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.

Posted: 12 March 2008 at 11:56pm | IP Logged

 here here...... how true, i wonder how long that took for someone to put into words.....

I for one will be emailing it to family members.... thanks for finding it hun x

Posted: 13 March 2008 at 10:17am | IP Logged

OMG thats so so true!!  Its hard sometimes when people dont believe you or know what you are going through - when clearly they dont.

Thank you Maddy for that wonderful post - couldnt have put it better myself!!

Posted: 08 April 2008 at 10:25pm | IP Logged

Hi Madzwalker - hi everyone,

I just burst out crying from reading that (still am  vety hard to type) This is my first posting. I have SPD for 19 mths now - just gave up work last week.  I want my life back - i want to stop blaming my husband (for getting me pregent - how does that make sense) i want to be a mom . I dont want to ask another person for help. I want to go for a walk on a sunny day  to the park - heck I want to shop in the large Tesco( cant as walk is too long) . I resent every new mom who passes my door waving with their two day in pram walking off their wee bump. I hate every fool who tells me if i lost a bit of weight (gained 4st while pregent) that pain would go away.

Ok iam starting calm a bit now - going putting this on fridge.

Posted: 08 April 2008 at 10:51pm | IP Logged

Hi hun, firstly welcome to the site.

Please don't feel alone..... there are a few long time sufferers on here, myself and madz being 2 of them.

Have you seen a physio? Chiropractor? What have you tried and haven't tired hun and who have you seen for help so far.

We have a SPD article here which has lots of tips and hints.

We also have a buddy system which can give you one to one help and advice. (there's a button at the bottom of my page).

It's normal to feel resentment and anger towards others, believe me i have but it makes you human, please know that even though we feel guilty towards our kids are kids don't suffer they are still happy and fun loving.

How many children do you have and how old are they hun?

I'm Tsena by the way and have had spd for nearly 3yrs now. My children are nearly 2 and 6 and a half. I live in Cambridgeshire with my dp. I look forward to chatting to you some more hun but you are definatly not alone.

Hugs  xx

Posted: 09 April 2008 at 8:47am | IP Logged

Hi hun!

I am sorry I made you cry - it always brings tears to my eyes too.

SPD can be extremely frustrating. I have spent many an hour crying my eyes out, thinking 'why me' - I hate the fact I cant always be a proper mum to my son.

I'm Maddy, my son Edward is 3 this week and we live in Cambridgeshire with my husband Tony.

My SPD start when I was around 8 weeks pregnant and I was on crutches by 20 weeks, a wheelchair by 30 and bedbound in hospital on morphine by 37.

After going through all the depression feelings - I realised if I wanted to get better I had to fight it myself - so I did.

I did a lot of research and tried different pain medications, I had acupuncture, I had loads of different physio techniques, found a chiropractor who specialised in pregnancy conditions (she did a lot to help me) and eventually got a referal to a pain clinic where I was offered prolotherapy - injections into the joint.

Since starting the injections I have approximately 2-3 months of pain free time in every 4 and it is amazing - I can do everything I did before. Its a long process but it has given me hope.

Look at the article and the buddy scheme Zany mentioned.

I look forward to getting to know you, and as Zany said - you are not alone!

Posted: 09 April 2008 at 10:40am | IP Logged

I can also relate to this!

I don't have SPD but if its anything like what i am experiencing now and i know its worse i feel for you all!

I thought i had it bad before now i am in constant pain with no relief. I would take stronger pain killers but daren't as i react badly to them. I always end up drowsy or sick.

This is a problem as i have no one to look after the girls or take them to the nursery so i have to wait until tea time before i can take anything.

Like you said there is no way to explain the pain!

Posted: 09 April 2008 at 11:01pm | IP Logged

Hi Tsena, Maddy and girls,

thanks so much for your messages. In a better head place today - i put up a notice in my local shop looking for some home help- got a call within the hour and she starts tomo. Twice a week for 1.5 hours to help with housework hoovering etc.  need to do this for my sake of my poor dear husband - who like most of the men in yer lifes should not be helping you put on your knickers. With SPD a understanding husband is really needed.

A little about myself in live in southern Ireland in Kerry - health system is even worse than uk. Got SPD at 28 weeks hospitalised at 32 induced at 38 weeks. Got a little * of a mid wife who did not read my notes and was 7cm with hip is spasm for 20 hours before i got pain relief. I was in bedroom upstairs for 4 weeks after birth ( was like a mini apartment TV chairs for callers etc).

So far i have had physio for 6 mths - Chiropractor - all sorts of massage chinese etc- even went to faith healer( he said i had wip lash). Asked about injections but i have it all the way around so may not work - is this ture?. Tried all forms of drugs....doubletroublewitty      
i fing taking drugs before bed helps with side effects. just keep trying new brands till you get one ... but none takes away all the pain.

I went for MRI last week at my own expense awaiting results... then i was recommended a osteopath in dublin. Girls fly from UK too see him meant too be great. not going down op route as could end up worse. I am a montessori teacher and giving up work ( managed 7mths ) is very hard but what reserves i have i need for my son.

Been having the EPsom salt bath they help relax musles. Starting to find driving difficult which is major problem as live in country.

It was when i went past the sons 1st birthday last dec that my feelings started to change i think you give yourself a year to get over a birth but after that your fuse starts to run out a bit. I need to hear a story from someone fully recovered be it five years - but fully recovered. Anyone out there?

I also stuck chronic pain truths on fridge with a list of things i cant do - so the next family member who calls may get the hint. 

Again thanks for kind words

take care

Posted: 10 April 2008 at 8:45am | IP Logged

I havent fully recovered - but with the injections I am able to do so much more. When I have had the injections the pain is gone and the movement is returned. On my honeymoon last year I cantered down a beach in St Lucia on Horseback - my dream and something I believed I would never do.

I also started salsa dancing classes at the begining of the year and also started cycling weekly.

My problem is also all the way round - I am injected into both the symphysis pubis joint and both sacroillic joints at the back to give me full stability.

Believe me, before I started this treatment I had nearly given up. I was in agony everyday and could hardly move off the sofa - I was even sleeping apart from my hubby as I couldnt get upstairs. I was at an all time low, on anti d's, strong painkillers and resisting stronger.

Now I am not perfect now, in the run up to the injections its awful and reverts back to how it was, I am high dose prolonged release morphine to cope with the pain and have to rely on friends and family to help care for my son. But I always know I have 2 or 3 months painfree to look forward too and my consultant is sure he can get me fixed long term in a couple of years.

Have faith - after a nucular bone scan I was told without surgery I would never walk again unaided - and I may be in a wheelchair even with the surgery - I am walking proof this can get better and the medical proffession dont know it all!