Legs!: I'm nit someone who cries easily or... - LUPUS UK

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Legs!

cathylou
cathylou

I'm nit someone who cries easily or frequently but I've been sobbing on and off since yesterday. I am in so much pain I don't know what to do with myself!

Went to the GP earlier to beg for pain relief but after listening to my chest decided I still have an infection and so I can't have strong pain relief as it interferes with breathing.

Apparently I should start to feel better when the infection clears so he gave me another course of antibiotics (7th in 10 months).

My routine bloods came back ok from last week so I can stop taking folic acid and my b12 is fine.

I have tried hot baths, Epsom salts, heat sprays, cold sprays, cool packs, gentle exercise, rest, sleep, codeine, naproxen, paracetamol. I don't understand how nothing works?? Is the pain psychological?? I can't make sense of it!

28 Replies
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Magnesium? Potassium? And try a product called Theraworks? Google it? It’s a temporary fix. The doctor pushing it is a doctor who helps wean people of narcotic pain relief? Maybe give it a try? I’d stay longer but I’m fighting a huge flare atm! Be back to check on you! XxGood luck !Be 💪😅🥀

cathylou
cathylou
in reply to MO3S50

I'll look into those, thanks x

I am so sorry to hear you are in such pain looking at the list of medications you have tried I wondered whether the may be worth asking your GP if he would consider prescribing a voltarol suppository they are excellent I use these along with co/codamol 30/500 for pain x I hope you will soon feel better x

didn't know you could get pain relief suppositories! He looked at me like a drug seeker but initially I didn't even want codiene because I hate feeling light headed! He did arrange for me to see my rheumatologist next week which I'm grateful for but when your in pain and have young kids 7 days feels like a lifetime and that's even assuming the rheumy will want to try something different xx

Yes you can get suppositories honestly I find them much more effective not pleasant but good effect if the 30/500 co/codamol is making you lightheaded drop to the 8/500. I use 8/500 in the day and 30/500 at night or dependent on level of pain let me know how you get on xx

I can't stand the 30/500s but its needs must sometimes. I get more than light headed - I feel sick and get so sleepy which isn't a good combo with the fatigue! Haha!

Can you buy the suppositories? X

No they are prescription only your GP or rheumatologist can prescribe them for you I understand your Doctor being careful with the pain relief due to your severe chest infection but they should address your pain relief I would give your GP a call again especially if you can’t take the co/codamol and it’s making you sick x

thanks for your help, I'll try that 🙂

Hi Cathylou

I have been through exactly the same you have described for six months last year. First leg blood cote extreme pain for the first three months, as that was recovering the other leg had an inflection another three months. for two month in between legs both were in extreme pain. I lost my mobility and even going to the toilet, washing myself, getting water was a problem.

I tried all pain killer the doctors would give me, been in A&E many times. I was admitted into hospital twice. I felt bad at the time for taking up a bed, but the nurses and doctor told me 'I needed help as much as others'. Message to you is if you feel you can't take it any more ask to be admitted. Trust me the pain is so much better when it can be rested well.

Another way of me getting though my pain was to work out what I need to do and when I need to move about. I will take my pain killers 15 minutes before I need to move i.e. go for a wash. I will then use 15-20 minutes only do what I need to do.

I got so good in which pain kills I can mix and timing of when it kicks in. Ask the pharmacist, I am lucky my sister-in-law is a pharmacist.

My pain was so bad, my doctor give me morphine, but I was super sensible and only took it when I really need it and recorded when I did take it.

I really thought my pain will never pass but it did.

Good luck and try not to move too much.

wow! That sounds awful! So glad it eventually passed for you. Xx

Sorry to hear that you have so much pain in your legs - I had a similar problem earlier this year to such an extent that I wanted to cut off my legs (drastic I know ) all

The usual pain relief wasn’t working so I brought some CBD oil and have never looked back . You can by this in line or from health food shops . Hope you get your pain under control very soon 😊

I almost wrote yesterday that I wanted to chop my legs off! When you're so desperate for relief all sorts go through your mind. Unfortunately I tried cbd oil. It worked wonders for my facial paralysis but didn't touch my pain. Xx

Consider a higher strength - you might find a difference good luck x

I am sorry to hear your suffering from leg pain. I can very much appreciate it. You probably have already tried these but maybe it may help if you haven't. I find moving to different positions, standing, sitting or different chairs as much as possible helps. It's not gone but it helps. Also I have made my bed my happy place. I've put 4 feather pillows beneath my knees and 2 under my head, this makes a cradled position. This is the most comfortable space to be. But who wants to be in bed all day? Also I try to do stretches, you know your legs and what stretches help them. Also I find Dihydrocodeine instead of codeine, don't know why, maybe it's just in my head. Also Diclofenac with Omeprozol if you can ask for just a few for urgenct situations, with Co-Codamol. The relief doesn't last long but it's better than nothing. Oh and keeping my legs warm is a MUST. Hope something helps.

🌻❤🌻

Thanks for the suggestions, definitely going to try these out xd

Funnily or not so funny, I've been suffer more than usual with leg pain. I thought of you. I hope your doing better! Maybe it's the weather.

I hope you're on the low side of pain today.

🌻🤗

Please don't think you are making this up in your head. Something is wrong so halfway through or at least 3 days from start of antibiotics go back and explain that you just can't live with this pain. Don't accept a diagnosis of ""All in your head". That's a lazy doctor's way out. Hugs

cathylou
cathylou
in reply to Angelann69

Thank you, I may need to do something drastic if the other suggestions don't help. My husband has put his back out and I have a deaf daughter who's just had surgery (last Thursday) and a partially sighted son so both need a lot of attention. It's like the walking wounded in my house at the moment! Haha!

Sometimes I think I just need to 'man up' but when I try I end up worse. I've always thought if you're in pain, you take painkillers and it's problem solved. Find it hard to accept there are pains that don't respond and I'd like to at least understand why the leg pain doesn't respond, what's causing it in the first place. Xx

It's a bit more manageable today (hasn't reduced me to tears yet) as it's from just above my knees down whereas yesterday it was from my hips/pelvis down yesterday xx

I’ve been where you are and it’s agonizing and relentless pain. I am so sorry to hear this for you. I used to use tights or leggings and then wrap myself very tight around my legs with the blankets. Between the warmth and compression it works. I would lay down focus on a program and fall asleep for a brief time even. Good luck 🍀

Do you know what the cause was? X

Nervous system freaking out. That’s why compression works pretty well. Give it five minutes or so but you’ll get there. That’s socks too. If you have dogs 🐕 have them lay on top of your legs too. The more pressure the better!!!

Hi cathylou. I also wanted to chop my leg (actually my whole right side)off due to being in so much pain. After trying everything and nothing working, my Dr prescribed Tapentadol. It is a really strong pain killer but its worked for me so flare ups are not as bad as they were. I hope you get relief soon. Please let me know how you get on. Stay strong, sending hugs xxx

cathylou
cathylou
in reply to ange726

Tapentadol? Are you in the UK? Xx

ange726
ange726
in reply to cathylou

Yes UK x

ange726
ange726
in reply to cathylou

It's an Opiod and is used when nothing else works for moderate-severe pain. However, I must caveat to say that this was discussed and prescribed by my pain clinic after trying everything else. How are you feeling today? Xx

cathylou
cathylou
in reply to ange726

I went for an abdo scan today and as she was pressing to see my left kidney she set off pain there too! Think I'm ready for the scrap yard! Haha!

Hi Cathylou,

I understand completely. I used to beg my doctor to amputate my leg. I've taken every opiate pain killer, Ultra (tramadol), and Lyrica. I became an Aromatherapist and found a blend that really helps with muscle and joint pain. First, you must buy high quality therapeutic grade essential oils. A small 10 ml bottle will last for months. I purchased 10 ml rollerball bottles on Amazon. The recipe is 5 drops of Frankincense, 5 drops of Sweet Marjoram, and 4 drops of Lemongrass. Then fill the bottle with Fractionated coconut oil, Jojoba oil or Sweet Almond oil. You don't need much for it to work on muscle and joint pain. This blend is amazing! Prayers and positive thoughts!

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