Pain getting worse over time!!

[JoLouise88]

Morning all, just thought I’d check in! Is anyone else pain continuing to get worse over time? The pain in my hips, legs and feet are just getting worse over time, and without meds, I physically cannot move. This week is up there with one of the worst weeks since being diagnosed! I really really don’t want the medication but have literally no choice! I fight daily to at least get the dog walked around the block, try to keep the household tidy and fed but day by day I’m struggling more!! Any advice or tips would really be listened to and appreciated!! Hope everyone’s enjoying the sunshine 😃

[Cotswolds25121]

Hello JoLouise88, I have had the worse week since being diagnosed too😥it’s definitely not fun is it! I have been totally exhausted and the pain has been the worst it’s ever been and I’m really hoping that it doesn’t last. I’ve known for a while now that I’m going to have to stop working but I’m a Carer and love my job. But what I do each day is contributing to my fm so I’m going to have a chat with my manager tomorrow and see if I can drop a day a week, financially I am dreading it but it’s a case of having to. My health has got to be a priority. Even msging you my thumbs are painful 😣 so I leave it there and just say you are not alone although it feels like it. 💕💕

[JoLouise88 in reply to Cotswolds25121]

I’m unsure if weather makes it worse? I’m loving this heat, but maybe it’s not loving me!! I always thought winter was worse but this week has topped everything I’ve been through so far!! I just can’t understand why the pain is so specific to my back, hips, legs and feet. It’s just an agonising ache!! As you say that ive started getting a shooting pain in my left hand which sometimes radiates up the arm, when My arm is down or holding my phone. But this doesn’t really bother me. It’s annoying and hurts for a split second but I’d happily take this over the nasty ache. Just don’t know what to do now!! I honestly wish that I was alone!! I wouldn’t wish this on my worst enemy so to see so many people suffer with this with no real concrete answers upsets me. I really hope you feel at ease in time! Sending as much healing your way as possible. Try to get out and enjoy that beautiful sun x

[JoLouise88 in reply to Cotswolds25121]

Just to say, I got signed off long term last January. I was heartbroken as loved my job. It was my last bit of independence I clenched onto!! At this point I hit my bed, so that’s were my puppy came into it! My partner went and got me my pup to have a reason in life! My children were 8 & 11 at the time so in theory we’re pretty independent and not reliant on me so much, plus being at school full time!! I have to no matter what get my dog out twice a day! I clench my teeth, cry, sweat but I do it!!

I’ve still not fully come to understand that I won’t be working anytime soon, and for universal credit and PIP I can’t thank them enough. Although it’s not fantastic income, it’s an income which I don’t have to stress about at this precise moment! It keeps my children fed, clean and a roof over our heads. I know how you feel, it’s last resort to be signed off work, but health really is everything. Please just think about yourself just temporarily. We all need that little break now and again. It’s not being defeated it’s being sensible. X

[Cotswolds25121 in reply to JoLouise88]

Thank you so much for that. It helps me see the wood for the trees👍The heat is too much for me lol but I do have all my windows and doors open😀enjoy the day 🤗

[Hope123456]

Try a water fast…fasting helps heal the insides and get more energy

[JoLouise88 in reply to Hope123456]

I have just been reading up on this!! Never heard of it, but certainly give it a good go! Thankyou for suggesting x x

[Makie-Uppie in reply to Hope123456]

I hope that is a fast were you just drink water for a few days and not a fast were you cut back on your water intake, the latter would be bad. The one thing I have learnt is to eat a healthy balanced diet, for those things I can not eat I have found alternatives. Fasting the GP told me was a bad idea for F-word sufferers. While it may give you a temporary lift, this is achieved by your body going into emergency mode, something you don't want to encourage.

[fibo]

Hi..I fort for 10yrs to get though each day, but then I gave in gave up my Job, thinking I could just care for the home 🏡 but 10yrs on again I do nothing my Husband gets the meals and cleans some of the house the rested stays dirty I do what I can, I am in wheelchair out of the house, but the pain is not as bad if I rest most days if I do anything I am in agony and can't breath, I know this is no help to you, but Yes it does get worse and worse it's 22yrs since the pain started take care 😅

[JoLouise88 in reply to fibo]

So sorry to hear this! So sad what this takes from people. 😢 I caved in and called a doctor, just anything muscle relaxers anything just to stop this for a couple of hours! She said no as I could get addicted, “it’s a chronic pain condition“ and she said “ I’m afraid your going to have to learn to live with it”

I’m actuator sure if I could even feel the slightest bit of compassion in her voice!! So the doctors are more concerned that I’m going to get addicted to diazepam than actually doing something crazy! I’m not suicidal by the way, and haven’t had any thoughts but I’m z as little stronger in mind, but I can see why this way out crosses peoples minds!!

She ended up upping my amtriptaline and hoping sleep will give me another fighting day!! Honestly this whole condition and how it’s treated is pretty disgusting! My heart goes out to sufferers and families dealing with this daily, it’s not just us suffering!! Keep your chin up lovely, remember sometimes just getting out of bed is enough for one day! So so glad your husband understands and supports you x x

[Makie-Uppie in reply to JoLouise88]

I still feel that when somebody is in chronic life changing pain addiction must be weighed against the relief someone gets from taking a drug. As always I would like some of these medical professionals to walk in the shoes of their patients. Friends mother has terminal cancer, they are reluctant to give even mild opiates because of the risk of addiction. She has a year at most, does she really have to spend it in agony because of a policy. Paracetamol does not help her but she has enough supplied to kill a small village. Perhaps that is what they want, cheaper for the NHS if she is dead.