Well, folks, I went to my second physio session yesterday evening, and my pain was quite severe, I was stiff, and my spine was feeling "fragile" (you know that feeling where you think something might snap). So I was dreading seeing her and perhaps being told I was in too much pain to work with, as I could barely walk, let alone move my limbs etc. She announces she is going to do some acupuncture if I would like to try it. I have never had acupuncture before, but i am open minded- chronic severe pain does that to you, you will try anything once eh!
I was dubious from the start as I had to lie on her work bench. You will understand my trepidation if you have read my previous posts; I haven't lain flat on or in any surface for over a week now, as the pain on trying to get up is so severe and disabling that I considered calling an ambulance at one point. She assured me that she would assist me to get up. So with a trusting all be it slightly cynical heart i position myself ready for the treatment.
I need to tell you that i have been longing to lie flat for a week. The feeling of lying down to rest when you know you cannot is almost overwhelming as i sit in my sleeping "throne" at night. So I was very relaxed before she began. She asked me where the most severe pain was and examined my spine. She then placed four needles at various points, one near my disc, my buttock area, my hip and one in my ankle. She wiggled them until they hurt, and then left me for five minutes. It didn't really hurt at all, just a sharp twinge when she wiggled. When she returned she gave each needle another wiggle until they hurt again. the hip and buttock one were very numb so she was trying for a minute or so for the reaction she was looking for. Then another ten minute wait. then she removed them all. And that was it. getting up was as i expected, quite painful, but i did it with breathing through it and doing it "my way".
She explained how the needles were a way of persuading the body to release its own painkilling chemicals and, using my own healing response to bring oxygen and nutrients to the damaged areas. She said that people reported feeling sleepier after treatment, and pain could be slightly worse for the first 24hrs. (WORSE? oh gosh....you didn't tell me THAT before we started! LOL) I booked my next appointment and tootled off home, not really expecting anything much to happen, good or bad, if I'm truly honest.
This was at half seven last night. By 10pm I was very uncomfortable. I had taken my max amount of daytime painkillers, and I didn't want to take my night ones just yet as i had to get through the night with their effect. I was rocking in pain. I made my sleeping throne on the settee, and prepared myself for a bad night :(. However, i was reading and must have fallen asleep. My painkiller is sat there this morning in its little tub....I hadn't taken them! I slept six hours....a miracle in itself.
When I awoke I had the strangest feeling. As i was coming round from my sleep, I felt something was quite different....what was it?............. My pain....where was my pain?...... WHO NICKED MY PAIN????
What a VERY odd sensation! For months and months my first waking thoughts must be "what level of pain am I in?" My first plan of the day is "at what time am I taking my pain killer?" Well, let me tell you, you get SO used to that feeling, that to wake and be in NO pain at all feels extremely strange. No pain. None. No back pain, no sciatica, no neck pain...nothing. You may have laughed if you had seen me, cautiously getting up, stretching, bending, reaching my arms and legs into funny positions, to examine where my pain had hidden itself!!! I went to make a coffee and sat in rather stunned silence in the garden.....
Here are my questions:
HOW LONG WILL THIS LAST?
DO I JUST TAKE MY PAINKILLERS ANYWAY EVEN THOUGH I DON'T NEED TO? (they are anti inflammatory mostly)
NO REALLY>>>HOW LONG will it last!!!!
I feel like ringing the physio up and asking her if she fancies moving in with us!!!
This has to be the acupuncture right? Now I've been up and about for nearly an hour, I have a slight twinge in my buttock, and I haven't taken my PK yet. My ankles are swollen and tight and uncomfortable (due to sleeping upright), and there is a very very dull ache down my leg. But just to have relief from that miserable agonising pain, even for an hour, has been the most wonderful thing. I am scared. I am scared this isn't going to last long and the pain will be back with a vengeance. I am scared that I can only have the treatment once on the NHS.
I have lost all faith in my own bodies' power, become accustomed to it letting me down, weary and disheartened by my own lack of ability to heal myself. It is as if someone put all my strength and healing power into a little vault somewhere and locked it away; now i have the key and can open the room. But i don't know when the alarm is going to go off and the vault door slam in my face.
Does anybody have this sort of experience with acupuncture? PLEASE share with me your experience....I think the physio will think I am weird if I ring her up to ask!!!
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ZedT
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How long does it last? Difficutl as everyone is different. David has been receiving acupuncture for 20 years now through the pain Clinic. With his programme they started at weekly intervals with the intention to get up to 10 wek intervals if possible. He found 6 weeks to be he max he could go without needing more. They are wonderful though and will always fit him in if he hits a bad patch or needs a boost before a journey eg.
Where we live the NHS physio will not give any more than a course of 4 - 6 max over a period of several months. This has worked well for me as I have a long standing SI joint injury.
So if you can get into the PC system you should get a better regime.
I would recommend to carry on wih your meds - apart from PK and take advice from the physio.
We have all been pesimistic about how a few eedles stuck in your body can work! But when yoi know how they work it seems logical. Your Endorphins kick in and David always sleeps during his treatment. A sort of warm glow takes over.
I also just started acupuncture after 3 major back surgeries in the last 2 years (and a big one for scoliosis 30 years ago...have what amounts to a medium sized robot in my back.lol) and really liked it! Also had "cupping" done which was quite interesting. My practitioner was VERY knowledgeable and made so much sense as to all the biometrics involved with these surgeries. So looking forward to going back this weekend!
Yes it does help Pat, thank you. I am so pleased to hear that it is successful for David and yourself too, and to have relief for a week seems like an amazing dream for me. I would love that. I am hoping for a PC appointment soon, my Drs were "waiting for the consultants" last week to see how we proceed. It is taking a long time but i am on to it now. At least I have a direction they can take me in now with the results I have had today. I'm still in shock! I am celebrating by shaving my legs- something i haven't been able to do in months!!! all the best, Zoe x
it IS really tempting to run around doing cartwheels!!! However, i couldn't do cartwheels before so i shan't bother now
I did do ONE star jump to show my husband how "light" and flexible i felt. Just the one. He noted that i was holding myself upright and that the strain in my face had gone, and he also said (in his usual tactful way) "and i haven't heard you making any stupid noises today either"!!! he means the gasping ouches and groans that have become a normal accompaniment to my everyday movements. I had my lunch time painkiller, and i went to work. I had pain at work, not as severe as usual though, and i didn't need my nightime meds. Its day one, and i have had nearly a full day with only mild pain. If that is all i get until the next time i am happy. I cant wait to go again! Zoe x
I am delighted to read that you have this relief, however long it lasts, but as Pat said, do be careful not to overdo things too soon, just enjoy!.. My Chiropractor gave me a small amount of acupuncture on a couple of occasions but then ruined it by doing a further adjustment on my back, with excruciating results - so I will not go near her again - AND I had to pay for the treatment!! Since having a steroid injection into a nerve root in my spine nearly a year ago I have been so much better, thankfully . I don't know how long the improvement will last but at least I can potter in the garden and walk my dog and drive again. Only prob now is awful cramp at night which quinine tabs and Crampex sometimes help, but not always. But I can live with that!
Hi Chrissy, what a shame about your chiropractor; I must admit mine didn't seem to do much for me, and blimey they are expensive! But you're right, its a sort of balance isnt it? We have to work out what we can change and what we have to accept and live with. If i can get on with my everyday tasks and take part in my little girls life i will feel satisfied. Alot of my pain was worsened by lack of sleep. Now that i have found a way to get more than two or three hours things are much better. And of course my wonderful Physio (who i suspect is supernatural!).
What a great feeling to be pain free!
You've had a very good response to accuuncture if you haven't had the pain following treatment. It may take a day or 2 to come. Take it easy. Keep the painkillers for when you need them. The physio will need to know the pain pattern for the next treatment.
It seems like magic. If your physio respects your pain and doesn't try and do too much at once, I think you will have a few months of pain free time when the course is finished.
I had a 6 week course on the nhs as part of the pain clinic and I was totally painfree for 3 months. I used the time to build up my stamina and fitness for the days when it would wear off. We don't have a pain clinic just now, so I can't get a top up.
Keep at it, life is peachy on the alternative route.
It really DOES seem magic zanna! I can't understand why they didn't just send me to try this 7 months ago! they would have saved us all a lot of bother not to mention the expense of experimenting with pain killers and numerous appointments at the GP/hospital. Anyway, I rang the Drs yesterday (they still have no MRI results or Consul;tant report, and the secretary admitted it was unusual to wait so long and will get a GP to chase things....heard that last week though so i shan't hold my breath). As my GP had said depending on the MRI results and what the surgeon wanted to do, they will get me a PC referral. So yesterday i said, PLEASE can you just get me a referral anyway, because i have had a good result with physio, and i know I've probably only got two to four sessions left. i would be SO gutted if they snatched this relief away from me. We wait and see. Thank you for your support
No problem, it's good to see a good result for a change.
The NHS is agsainst all types of alternative therapies because they can't quantify or standardise the treatment. Although in some areas, they are using some, but it's often a battle to get it, and in my case I could only have one go at it. I suspect the pharmaceutical companies may play a part in it too - more patients using alternative therapies means less pain killers being bought. Less profit for them. Doing the right thing by the patient is not always top of the aernda.
What wonderful news just hope that the affect is very long lasting. They have unfortunately stopped doing acupuncture under the NHS with the physios in our area. I have electronic acupuncture through the Pain Clinic but unfortunately because of NHS cuts they can only give it every 4 months. When I was receiving it on a more regular basis I felt as though I was getting improved pain relief. As the others say don't do too much, too soon as you want to be able to reap the benfit of this new nearly pain free existance. I bet the good nights sleep did you as much good as anything. Sincerely hope the good effect carries onx
What a flipping post code lottery the NHS can be I feel really very badly for you. is there no way you could somehow appeal this? It seems to me to be inhumane to take away a treatment and leave someone in pain because of such cuts. please look into it, there may be a way to get this. have you applied for PIP? i know the backlog is HUGE and you have to be practically in a coma to get it? But if you did you could maybe afford to have to treatment again. youre right, the sleep is a MASSIVE help in every way. Thank you for responding and good luck X
I'm on LR DLA care which will run out next April. I am wary of rocking the boat before then as PIP only has the equvalent of MR and HR care and they can look at it and take it away. At the moment it is just enough to enable me to keep running my little car. Looking at the new PIP I think I probably miss out by about a point as my condition is so fluctuating. There seems to be a massive amount of acupuncturists about but not those who give the electronic ones in my area. When I asked the pain nurse he said he didn't know of anyone in our area that provided it or I would scrape the money together for it. When I asked the pain specialist about normal acupuncture he said that I would require so many needles it would be cruel to do it. I would probably end up like a pin cushion and start leaking. Hope you still feel pain free and get another good nights sleep.x
Great result! If you have been on high levels of pain killers for a while, I wouldn't suddenly stop them, as you can get nasty withdrawal reactions. When I get a sudden relief of pain (usually when I have a short course of steroids) I start by cutting my codeine or strong painkiller doses down by about half, but I will keep up NSAIDs for a bit longer (as they are more antiinflammatory than pain killing). Codeine particularly isn't something you should stop suddenly.
My pain killers are Ibuprofen for the day ( plus the odd paracetamol if i want) and Zapain (codeine phosphate and paracetamol) at night but i dont always take it. I have really tried to avoid very strong pain relief, so i dont have a problem stopping them. My Ibuprofen i have been trying to take regulary because someone here suggested i would get better relief that way, but i can half the does if needs be. i had one dose yesterday, and some mild pain later in the evening, but all was well at night and i didnt need my night meds. This morning i have taken half my usual dose of ibuprofen and that seems fine. i am doing the same as you really, taking them for anti-inflammatory effect.
I wonder if the lying flat plus the pain killing effect of the acupuncture actually allowed your spine to reposition itself a bit so it wasn't pinching nerves?
I didnt lie flat at any point earthwitch! if i had i would never have got up without them knocking me out!!! i lay on my "good" side with a pillow between my legs and one under my head. it felt lovely just lying down, but essentially that is the position i sleep in except i am upright, if you see what i mean! Right now it is the "getting upright again" part of my condition which is so painful. i awaken ater an hour in absolute agony in any position at all in bed. But i am hopeful that there may be a nice comfortable spot next to my husband in our bed in my future, if all goes well !
You could maybe ask the physio to teach you different ways to move around the bed. I still log roll (body ridgid as you roll over) to get from back to side to front to side. Apparently I do it automatically at 90 min intervals. Not always aware that I do. also there is a way of getting up where you lie on your side, swing your legs out and push up with your top arm to a sitting position. Its often taught in pregnancy to protect your back. Also if you are feeling agile, a bit further down the line, you start on your front, push up on your hands and bring your knees into a kneeling position, then slowly straighten up, then crawl backwards off the bed straight into standing. There are possibly others too.
Hi zedT, Good to hear you have got some pain relief, But sleeping in a chair or anything else siting upright no pain relief will last very long, I know from from my own long time agony, if the needles are working for you the next thing you need to do is invest in an electric bed, I know they are expensive but it will be the best thing you have done to help yourself , Being deprived of sleep through pain is in itself mind and body destroying also it will cause allsorts of other ailments that you can well do without . I took this advice from my pain management doctor four years ago when i had hit rock bottom through pain .Next time you speak to your physio tell them what I have said to you and see what they say to you. Good luck to you Tricia.
Thank you for your advice triciaj, i will consider this and look into it. I am sorry to say there is NO available cash to buy something like that right now, because this illness has left me on minimal hours and we are plunged into a very low income. There simply isn't a penny to spend. In all honesty, I am hoping my "throne" at night is only temporary, because my feet are very swollen, and maybe i will give it a go once some regular effective pain relief is established. The acupuncture is perhaps the treatment that will give me this. I have to wait and see For now, i am getting enough sleep.
I can TOTALLY relate to your experience...am TOTALLY celebrating your achievement!!!!'
my version of acupuncture success is slightly different:
although I gave "traditional" acupuncture a really decent go, it never helped me any more than the NSAIDs & analgesics my gps & consultants were prescribing did... lifestyle management + the Alexander technique, pilates etc etc at least helped me tolerate my version of chronic pain...BUT, eventually, I had a "version" of acupuncture that REALLY helped me. This is called IMS (intramuscular stimulation...you'll find info via google). IMS is mainly used only by trained & qualified physios & doctors cause the needles are much longer & go deeper than most traditional acupuncture needles.
It was my hero pain consultant who prescribed IMS following my first bilateral cervical spinal facet joint denervations in 1998. IMS was MAGICALLY effective in freeing up my soft tissues, which had been denatured due to my untreated infant onset lupus + ehlers danlos type hypermobility + spondylitis aggravated by injuries.
Over the years since then, I've also had sessions of bilateral denervations to my lumbar & sacral facet joints, followed each time by 6 weeks of IMS in tapering frequency. The combination of denervations & IMS has worked miracles for me.
HOWEVER, when my version of SLE was finally diagnosed 3 years ago, I had even more pain relief: daily plaquenil cleared up any lingering synovial cervical pain (only the highest cervical joint is synovial), and last year low dose pred tapers cleared up any lingering lower spine synovial pain (sacral joints are synovial). I am now on daily plaquenil & myco which are as effective as the pred tapers.
I have quite a long repeat prescription list, because my version of multi system autoimmune disease affects my skin, eyes, undercarriage etc...so as well as oral meds, I use topical meds, drops etc
The names your querying are some of the more common prescription medications used to treat systemic lupus and also used for other autoimmune conditions:
Hydroxychloroquine is an antimalarial, I take tablets of the brand plaquenil, 400mg daily
Prednisolone is a corticosteroid taken orally in tablet form, and often in tapered doses, e.g. When symptoms are flaring, I'm permitted 3 four week tapers per year, which begin with the first week on 10mg daily and reduce by 2.5mg each week until I'm finished my supply of tabs
Mycophenolate is an immunosuppressant (also for organ transplants) 1000mg per day is my therapeutic dose
Yes, the story is that during. WW2 some soldiers given hydroxychloroquine (nickname hydroxy) as an antimalarial experienced relief of rheumatic pain. After the war, hydroxy went on to be prescribed for autoimmune joint pain and now is even being prescribed for other autoimmune conditions eg crohns.
Plaquenil is a brand name of hydroxy, and is considered the most GI-friendly version. I've been on maximum dose daily for 3 years now. It took the edge off my systemic lupus joint pain immediately.
but as time passed, my consultant felt I needed to add daily mycophenolate to help with other chronic SLE symptoms, and prednisolone tapers are vvv helpful during flares
Thanks so much, Barnclown, that's quite a list but you obviously know how to manage your pain. I was on Prednisolone a few years ago when I had PMR, my Dr wanted to start me on 40 mg which horrified me, so prescibed 30 mg instead. I waltzed into his surgery 4 days later saying they are magic, I felt so much better, which proved he had diagnosed me correctly. These were gradually scaled down over 17 months until I came off them - wasn't too happy being on steroids but couldn't have managed without them as you obviously know. Thankfully that problem cleared up but have had various things since but nowhere near as bad as yours, do hope you have some sort of life.
PMR is PolyMyalgiaRheumatica. You wake up one day and find your joints and muscles ache, you can't turn over in bed, I couldn't do my bra up, this happened a few months after I turned 71 and I thought if this is what being 71 is, then I don't like it! Then I remembered my mother had suffered like this and been put on steroids - she actually remained on a low dose of 3 mg a day for the rest of her life as if they were lowered then the aches returned. She lived until
nearly 97 and they didn't seem to cause a problem, although steroids do cause thinning of the bones, so doctors also prescribe alendronic acid to counter this - though not everyone can tolerate this.
Your story inspires me. Well done for putting 2+2 together and getting diagnosis so efficiently. A dear friend of mine found diagnosis of his PMR v difficult, but once it was ID'd steroid treatment helped immediately. Now & then his flares again, but he can cope via pred. PMR is a dreadful condition
I guess I'm lucky, because, yes, I feel I've had a FAB life despite the constant pain & crises & disability. Perhaps it's a good thing my mother kept my infant onset lupus diagnosis a secret...because knowing might have stopped me undertake my adventures. Instead I just coped with the hospitalisations & flares as "normal" because all my drs said they were.....and these des were right in a way: systemic lupus is a progressive multi system condition, which means the effects of flares can accumulate relatively gradually. meanwhile symptoms & aggravated episodes can seem to be just isolated examples of stuff that non-lupus people get, and a patient is treated accordingly
It was only when I reached 58, that the accumulation of progression lupus-effects throughout my bod became so obvious, the the nhs put 2+2+2+2+etcetc together and started systemic treatment....now, 3 years on since treatment hegan, I have less pain and more stamina and sharper brain function than I've had since the 1970s. My version of lupus is serious, I know, but so far my vital organs are coping well enough for me to feel v lucky, fingers crossed
Meanwhile, I've been caring for my hero husband whose crohns was diagnosed when he was at university, and has involved several major operations and decades on daily oral steroids. It went into remission 10 yrs ago....since then he has become I new man, full of life & vitality...meanwhile, I hit my lowest, finally got the lupus diagnosis, and have gradually found this remarkably effective treatment. Taking such heavy duty daily meds goes completely against my natural inclinations, because I'm a DES daughter with significant reproductive system birth defects. My consultants think my inutero DES exposure is probably the main reason I have systemic lupus
I hope you don't mind me going on in such detail, but my feeling is that your comments & experiences mean you'll understand how I'm feeling. There is so much more I could add, but enough is enough
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Just the one. He noted that i was holding myself upright and that the strain in my face had gone, and he also said (in his usual tactful way) "and i haven't heard you making any stupid noises today either"!!! he means the gasping ouches and groans that have become a normal accompaniment to my everyday movements. I had my lunch time painkiller, and i went to work. I had pain at work, not as severe as usual though, and i didn't need my nightime meds. Its day one, and i have had nearly a full day with only mild pain. If that is all i get until the next time i am happy. I cant wait to go again! Zoe x
I feel really very badly for you. is there no way you could somehow appeal this? It seems to me to be inhumane to take away a treatment and leave someone in pain because of such cuts. please look into it, there may be a way to get this. have you applied for PIP? i know the backlog is HUGE and you have to be practically in a coma to get it? But if you did you could maybe afford to have to treatment again. youre right, the sleep is a MASSIVE help in every way. Thank you for responding and good luck X
Acupuncture!
Acupuncture 
Acupuncture
Acupuncture.
