Struggling with so many conditions.

Hi. I'm Emma and i've just joined this site. Just filling in the initial questionnaire has left me feeling alone, as each condition I have that I typed in, came up with 'no match'. Really fills a girl with confidence.

Anyway, here goes. I suffer with;

Antiphospholipid Syndrome with genetic Factor V Leiden,

Chondromalacia Patella bilateral,

Prolapsed discs, L4-L5, L5-S1,

Migraines,

Mild asthma,

Chronic hip pain bilateral,

Hypermobility,

Hyper reflexia,

Depression,

Tendonitis in wrists,

Brain suffers electrical fits without the physical seizure,

Sinus tachycardia,

Sciatica,

Anxiety.

That covers most things, without going into the less problematic issues.

I've suffered with knee pain since I was 11 years old, and over the years have gained all the other conditions. It may sound like I must be in my retirement years, but i've just turned 37.

My life has been massively restricted due to the varying conditions, and although I have three wonderful children, I feel bad that I can not do for them what a "normal" mum can do. Instead, my eldest child especially has had to step.into a caring role for me over the years, which has taken its toll on him.

It's difficult coping with the levels of pain I have. I used to be on morphine, but was taken off of this over a year ago as I had been taking it for nearly 16 years. Unfortunately the pain meds I now take do not cover the pain, and so I am left to manage it myself. I do have wonderful gp's and they've all taken the time to familiarize themselves with my conditions so I am not limited to only one gp.

Its hard to cope at home as I feel useless not being able to do much, and I don't think my partner really understands just how exhausting being in pain is.

It would be great to speak to others in same or similar situations, and find out how others cope.

11 Replies

oldestnewest
  • I'm sorry you are struggling with so many conditions. It's not easy being in pain, especially as you are a mum (I'm 39 and single) I struggle with hypermobility EDS and my mobility is badly affected. I get around on a mobility scooter and use walking sticks. My back has some disc problems too and hip is the main reason of my bad mobility.

    I use some pain medication but it does not take the pain away but makes it easier to bare. I don't think other people know how much pain affects your life and gets you down.

    I believe that most of my conditions are secondary to my hypermobility EDS, as the faulty collagen (building blocks of the body) are responsible for so many conditions (PoTS, Gastrointestinal, Autonomic, joint problems, skin issues etc)

    I hope you find the support you are looking for, hugs 🤗

  • Hi Emma.

    I'm also an Emma with several of the same conditions as you - prolapsed disc L4/L5, migraine, hypermobility, sciatica, depression, anxiety - and a few different from you. It's really really hard. Especially with kids (I have 2).

    You aren't alone, though I know it feels that way.

    It's hard, it's challenging, it's lonely, it's frustrating. I'm with you there.

    No answers, but sometimes it helps to hear 'me too.'

  • Hello Emma

    So sorry to hear of all your pain. No, I haven't heard of all of your conditions before nor of those of the two lovely people who have replied to you. Am familiar with a few. I think you three are all very brave.

    Emma, with all your pain throughout most of your life, you have made a great achievement. You have three wonderful children.

    Please don't feel bad about what you cannot do for them. Any negative thoughts that creep in may make your pain and frustration worse. You are a normal Mum. You are there for them.

    It must be so frustrating for you though. To have the pain relief medication - that worked - taken away from you. Especially if you had no ill effects from it.

    My pain is manageable at the moment. I make myself as comfortable and warm as possible and rest when it is not. My husband's pain is constant though. Distraction helps us. Yes pain can be so exhausting. Then after sleep or rest here comes the pain again, just trying to mobilise.

    Sometimes others don't seem to understand. Sometimes I wonder if they just don't know what to do as they can't take the pain away so feel useless / helpless.

    I wish I could take my husband's pain away. All I can do is pray, which helps.

    I wish I could come over and give you a hand. Can only send my love and hope doctors come up with something for your pain.

    Lots of Love

    Mary x🐥

  • You sound like me! though I don"t have as many health issues as you :( It is so hard! as you feel no one understands you or what you are going though. take care

  • Hi Emma,

    I'm new here too.

    We aren't alone here n I'm looking forward to being in a place where there is empathy n understanding and where we can try to help n encourage each other.

    I have a lot of friends but feel very isolated n lonely living with pain n not being able to enjoy socialising n having fun with them. Not being able to "do" activities is very frustrating but I'm sure your children are thrilled to have your time n attention whatever it is you are doing with them.

    I have numerous medical conditions too including fibromyalgia n widespread joint, ligament n tendon damage causing chronic fatigue n constant pain. The only time I am pain free is when I am asleep....difficult in itself.

    I started with osteoarthritis aged 30 n had both my hips replaced by the time I was 41.

    I now have pain in almost all my joints including my hips n have recently had to give up work aged 52.

    Pain is very exhausting n unless you have been there it is mostly impossible to understand. Your husband isn't alone, my partner can be the same...not their fault but very frustrating.

    I'm not sure how I cope...I have meds of various kinds but I'm not sure which ones are actually doing the most/least. I try to have a massage once a fortnight. I use a heat pad n anti inflammatory gel on some of my joints. I take antidepressants n have had counselling. I have tried meditation n aromatherapy but those take time n may be difficult when you have children n it can be costly.

    One thing I do have is a Medipen. It's a vaporizer similar to the kind used by those trying to stop smoking but the oil in the Medipen contains CBD which is the therapeutic element of the cannabis plant. Don't worry it isn't illegal n doesn't make you high or drugged. It helps me to relax, which seems to be the most common effect, n so it takes the edge of the pain. If you are interested Medipen have a website explaining it all with testimonials. There are also posts on YouTube by people who use one. My stepdaughter who suffers from rheumatoid arthritis has one too n she says it helps her relax n feel less anxious.

    I don't know if any of this is helpful but I hope you find some help n peace of mind.

    Good luck

    Gilly x

  • Never give up.

  • Its so easy to say you are not alone,ive just turned 49 and i lived with my back condition for 24 yrs,i too have a list an arm long of conditions,im sick of listing them all.My daughter had to take on the role of carer and i feel guilty every day as she is a beautiful 21 yr old girl who has been there her whole life for me along with my eldest daughter who has 2 children of her own was my primary carer until a near fatal accident left her in beed of a carer.My youngest is also her primary carer.I had the back surgery done nearly 4months ago,luckily i had an excellent result,no more sciatic pain.The surgical procedures i had done are way to long to list.Life deals us some awful hands sometines,there is no one way to deal with our pain or conditions,no hanbook to help guide us.We just do the best we can with what we have been given.My brother recently had a bad car accident and we nearly lost him,he is now a paraplegic,i see what he has to overcome each day and thank my lucky stars that i can still walk.This is of no comfort i know to anyone else but when im helping him try and do the things i take for granted,i think again.You are not alone.Manditts.

  • Hi Emma,

    Although I am a grandmother (3 children, 7 grandchildren) I do understand what it is like to suffer constantly, and for many years, with chronic pain. As you say no-one truly understands what it is like unless they have experienced it first hand. However, it may be possible to arrange an appointment (usually via a pain clinic) with a psychologist - and your partner could attend as well. This may help him understand better and also help you to communicate how you feel more effectively.

    I do envy you your good and helpful GPs; sadly ours aren't that good - although I have previously had better help. I have degenerative spinal disease, IBS, fibromyalgia, foot, knee, hip and leg pain etc.

    I have had 2 spinal surgeries and seen pretty much every possible consultant etc. I take a lot of medication, including slow release morphine and liquid morphine (which I restrict to bedtime) but despite all this I am in extreme pain.

    I have had neck pain since I was around 7-9 years old and the other problems began from teenage onward, although I didn't have my first spinal surgery until I was 51. I am sure that, like me and many others, you are also exhausted - especially since you have 3 children to care for.

    Even though there may be no-one else on this site with exactly the same problems as you have, I imagine we all have a great deal in common with each other too. It is all too easy to sink into depression and, dare I say, self-pity. It is a struggle to resist that on top of everything else but it really is worth focusing on anything that lifts your spirits whether that is your children, music, art, flowers, comedy or anything else.

    I think this may be a little like AA and similar support organisations: "Hi, I'm Jenny, and have chronic pain.." knowing that we are all in the same (or very similar) position.

    Welcome!

  • Just a thought - has every one had blood tests to eliminate Thyroid conditions. Had immunology blood tests ? Antibodies tested?

    X🐥

  • I take thyroxin but haven't ever had other tests you mention even suggested

  • hello emma am new two . I know how hard it sum days I've had pain from age 14 now 44. has been battle ever since with pain killers . it had sum days just to get moving I've not heard of Antiphospholipid Syndrome but did read up pain just grind u down. I live on my own now has pros and cons I don't like being around people on bad days. ive dysphasia dyslexia . hope just talking can help us both. all the best paul

You may also like...