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Fed up!

Jun 08, 2019 7:58 PM

Cut a very long story short-level 2 fusion on l4 and 5 in 2014. Consultant and surgeon said that fusion is 'perfect' surgeries go. When i woke up from the op i screamed in pain in legs. CT and MRIs confirmed all clear. Roll on 5 years later and ive been in and out of consultants with orathpeadics and neuro. Brain scan was clear. Reports say early myelopathy cant be ruled out. MRI shoed buldging disc in C5 and C6. They said they wont fuse my neck as it wont reduce the numbness or pins and needles and i need to monitor my pain! Ive been 'monitoring' my pain for 10 years!! Rhumeotology diagnosed me with fibromyalgia in 2009. Orthapeadics are blaming the fibro for the leg pain. Even though its become worst since my fusion. Im fed up. Im not sleeping because of the pain. They have said there is nothing more they can do unless i litrelly cant move my arms or legd then i need to go back. I feel like no one is listening to me. I am off all my opoid medication. And i am just on gabepentin.(which doesnt work now my body is ammune to that also) i try to stay positive but its ruining my life! I dont go out. My social life is work. I cant be a good wife or mum because all i do is 'rest' if we go out for walks to exercise i end up hurting as cant walk longer than half hour. I have massage chairs, tens machines, bath salts, tried cbd, vitamins, clean eating. And nothing stops the pain. I feel i could stab myself in the legs to take the pain away. My GP says if the surgeons and consultants dont have an answer or even given me a real 'title' diagnoses they cant help me either. They just give out pills. I need all the advice i can get right now xxx 😭😭😭😭

Jun 08, 2019 11:21 PM

I’m so sorry you are going through this. I honestly believe not sleeping makes everything worst. I’ve been trying to practice mindfulness. It’s not always easy but it does seem to help. I have CRPS but several members of the community have had back issues/fusions and I’m sure they will have better advice.
Just hang in there ❀️

Jun 09, 2019 4:38 AM

I have the app headspace which is great but latley i cant seem to even meditate/relax which is likley to be increasing the fibro pain. Just down this week lol x

Jun 09, 2019 5:27 AM

Hi butyou , I’m Shore Welcone to the community I hope that you can relax . I’m try to do the same but my legs and back are bothering me this week .
I’m getting a back injection though Tuesday so who knows . Hug to you Shore β€οΈβ€οΈπŸŒˆπŸŒˆπŸ™πŸ™

Jun 09, 2019 5:32 AM

Hi oh btw you have simalar to me I have degenerated disc L4 and 5 .
I had injections on left and right now back on the left . Last night my foot left was bothering but my fiancΓ© massaged then felt so good.
He said to me that we can share our pain burden to each other . That means the world to me when he said that. He has lupus and left leg gone . But we are helping each other cope ...
I hope that you have some one also . I’ll be here if you ever need tobgent or chat . Hug πŸ€—πŸ€—β€οΈπŸŒˆπŸŒˆI’ll be praying have a nice Sunday

Jun 09, 2019 5:34 AM

Oh they also said to me if this don’t work the shots invasive suergry. So I’m hope the shots iWork this time and not wear off so easily. Hugs again Shore .....πŸ€—πŸ€—πŸ€—β€οΈπŸ™πŸŒˆπŸŒΉ

Jun 09, 2019 9:01 AM

Thank you all for your kind words. They wont do any more bilateral injections now as im only 40 and because i have had that many they think it will create scar tissue to much that will cause more issues. Its never ending. Last injection semt my nerves into a rave! It felt like i could of drawn all my nerves with a pen i could feel them all! Even in my finger tips. It took 2 weeks for them to calm down. My husband is so supportive but think hes just as bored with it as i am lol xx gentle hugs xxxx

Jun 09, 2019 10:23 AM

I'm sorry you are having so much pain. I have fibro and OA. Others on here have fusion surgeries. I don't know what to tell you except we are here and support you.

Jun 10, 2019 7:56 AM

butyoudontlooksick, I can so very much relate! I have issues from the L4-S1 area, as well as T11-12, & of course C2-T3 (4 cervical surgeries and 2 of those failed). I went through ESI's at all these levels between 2011-2013, so many in fact that they suspect it caused me to develop osteopenia and I had issues with my eyes; they had to stop the injx and I can no longer get them. And I had the steroid rave pain following one injx, and I never want to feel that again!

I have the myelopathy from my cervical issues, and ever since my hip surgery May 14, I'm getting even worse with changing symptoms in the arms & hands & fingers; went from mild tremors and light tingling to moderate tremors with moderate to severe burning & stinging. I'm getting concerned that while under sedation in my hip surgery (maybe while moving me from op table to gurney) they didn't support my neck/head and something moved at the confused areas & pinching off a nerve. This neuropathy is worsening quickly, and I'm concerned my delayed neck surgery to repair C2 facet, C3-4 & C7-T3 (pseudoarthrosis-failed to fuse) will become urgent. And then of course my lumbosacral issues cause sciatica into the left hip & leg (surgery done on hip socket) & following that May surgery I'm having just as bad neuropathy pain in the left leg all the way to my toes; burning & stinging. The doc says it will improve but I'm not hopeful. I didn't have this neuropathy in the leg before surgery, so why now?

I have Tramadol but it's not useful against neuropathy pain, no pain med is. I can take up to 600mg of gabapentin a day (400 at bed typically just to try to sleep). But if I take more, due to my sensitivity to all meds, it's like overdosing & I can't function (walk, talk, nada). And like you, I'm finding out the gabapentin isn't helping anyway.

I have had the same problem with walking causing worse pain for several years now, and before my hip surgery I was limited to 30-45 min max (just grocery shopping) but paid for it later. The more active I am during the day, the worse my neuropathy & fibro pain by bedtime & trying to sleep, and it's been this way for years.

The only thing I have found that gave me some relief (before my hip surgery at least) was elevating my feet higher than my hips, whether sitting or lying down. I'm wondering, since it's not working following my hip surgery, if that was more due to my vein reflux issues (blood circulation) in my legs. It does not help the fibromyalgia neuropathy pain as well anymore. I have to sit on a shower chair to bathe, and my left leg gets so bad it turns blue & purple...and burns/stings awful bad! I do try relaxing with slow deep breathing & thinking of anything but the pain, or read or watch something to make me laugh. But it's minimal help at best. I so wish I had better helpful suggestions for you. I truly know exactly what you are feeling, and yes it's sucks! Maybe some day researchers will find better ways to not only treat neuropathy & myelopathy, but alleviate the pain altogether. Until then, we have this community who understands & supports each other, carries us through. Sending you gentle hugs, love & prayers that a doctor can find something to reduce yours! πŸ™‚β€πŸ™πŸŒΌ

Jun 10, 2019 9:00 AM

Oh my thats sounds awful experiance for you! I am no way knocking our NHS. They have done what they to. But i feel like im exhausted just repeating everything over and over and fed up of sitting in waiting rooms! Its 6 mobths between each appointment and theb after 5 years still no answer. Not sure what im expecting them to say. I dont know what the answer is. I was addicted to tramadol (thats another story) but they knew this and then gave me codiene. I was on other meds and such a large cocktail they were bouncing off each other. Now i am only on gabepentin and only that since october. But it doent take the pain away. I think like the common cold there is nothing to stop pain. The only time ive ever felt normal without pain is the seconds before they knock you out for an operation. Lol maybe someone will invent the magic pill!

Jun 10, 2019 9:45 AM

Lol, we can hope! You have as good a day as possible!πŸ™‚β€πŸ™πŸŒΌ

Jun 11, 2019 10:51 AM

Ended up at the urgent care centre this morning. They have confirmed a protruding disc under the fusion site thats trapped a nerve. Not happy. Im upset and angry 1 month after prthepeadics discharged me 🀬😭😭😭😭😭😭

Jun 12, 2019 7:48 AM

Oh no! What are you suppose to do now? Try and take it very easy until they deal with this and get you relief.
I know that's easier said than done, because as easy as I'm trying to take it post-op on my leg, yeah I did way too much yesterday and paid for it with a migraine last night.
Sending gentle hugs with love & prayers for you!
πŸ™‚β€πŸ™πŸŒΌ

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