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Antidepressants helping PMR

Having had polymyalgia for just over 2 1/2 years it is taking its toll on my body with the addition of other problems idiopathic scoliosis when I was a child and I second corrective surgery five years ago and pain has becoming too much. Pain so much part of my life that is difficult to determine what it was like to be normal, if there ever was a normal. My lovely supportive pain consultant specialist retired last year and I have got a new one who is approach is completely different and has done two different procedures, that have had many times before, but have not gone very well to his lack of knowledge of me. With no follow up appointments pending due to a lack of communication from one department (day clinic and pain management )to another I’m left high and dry at the moment. I am having difficulties in being positive and motivated and with pain I am in. It is relentless and unable to function some day. I know we have good days and bad days (more bad than good in my case) and I make the most of what I have but life is tough. My mobility isn’t good so it’s not the case of taking a walk each day that can lift the spirits. I saw my Doctor yesterday and he put me on Fluoxetine but am I just taking more medication I don’t know what to expect. How many of you have gone down the route of antidepressants to get the motivation back in your life?

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You really are going through a rough time and I can only empathise with the relentless depressing cycle of bad days and low mood, each feeding the other. Why don’t you try the Fluoextene to see if you can change that cycle and start climbing back up?

If you are me you will research the drug you have been offered for side effects and contraindications.

I have been helped by an antidepressant in the past and also lost weight yay! I also cheered up quite considerably. Big hug and fingers crossed for you. ❣️

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Thank you. I feel I’m walking through treacle at the moment. I was down to 4mg and due to see Endocrinologist in May as my tiredness is dia at the moment but I have to be on that level for months and have several normal Adrenal test that indicate low function before I can have a synacthen test so it’s all negative there and I don’t feel right generally. I’ve had to up the pred as my hands hurt ( not sure about that) and my thighs too which is all new to me as PMR never affected this area before only neck upper arms and shoulders. I’m not even sure how long to up them for taking 9 mg as of yesterday. Done this before for a few days and back down and was better with pain but the upper legs is a new thing.

As for antidepressant it’s really not my thing I have tried several over the years only to stop after a few days of feeling unwell. Things are not good at the moment so thought I’d try again. Research is hard so many mixed reviews the mind boggles and as mine is already boggled it didn’t help.

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The NHS Site is a more measured source for drug info.

I don’t understand the protocol for testing your Adrenal function. ie having to be on 4 mgs for months and have several normal Adrenal tests that indicate low function before you have a Synacthen Test.

I had a Synacthen Test when I was on 6 mgs and it was low.

I am really sorry that you are struggling and potential solutions seem fraught with barriers. I do know that feeling.

These new pains should be checked out perhaps X Ray or MRI Scan. My Osteoarthritis has been active in this wet weather - very painful.

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My PMR was VERY active yesterday: woke to snow and it drizzled all day...

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So no skiing for you over the weekend. Hope you feel better soon. 🙏

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I gave up skiing about 5 years ago - for a range of reasons, PMR didn;t stop me, other things did.

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I don’t think the endocrinologist wants to really know about me. It was a request the Rheumatologist sent to him. He sent some long winded letter back to her with this info which I tried to take it in as she read it to me. On my next visit we talked about it a lot but was going around in circles as it’s not her subject and so she said she’d write again the the Endo dept I have an appointment in May. I suppose I want to know if it’s working or not. After your test what was the outcome when they said it was low?

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Is there anything stopping your rheumi doing the synacthen test?

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It has to be done by an endocrinologist in that department

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Do contact the Rheumatology department or patient services to get a copy of that letter. You have the right to it , and it will be easier for you to understand it and discuss it with your GP or Specialist if you can read it a reactions yourself.

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That’s a very good idea I think I will do that before I see him in May. Thank you very much for that sound advice.

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I talked about it at length in my recent post “ between a rock and a hard place” with many helpful replies. Basically, the Endocrinologist favoured stopping 5.5 Pred and moving to 25 mgs of Hydrocortisone, which is equivalent. You take it 3 x a day and it more closely mimics the action of our own Adrenal function. This allows the body to feel the need and prompts the Adrenals to begin to work more efficiently. The trouble is, HC will not do much for Pred withdrawal pains or PMR symptoms. He did promise that I had a 95% chance of my Adrenal function recovering. I can’t start this until May because I am visiting family in Australia for a few weeks. So I am sticking with Pred. I go complete with a syringe kit with emergency Cortisol in case of Adrenal crisis. I also have to abide by “ sick day rules” this means doubling the Pred in case of acute illness or stress. My body cannot yet provide the necessary extra boost of Adrenaline, in times of stress.

My Rheumatologist favours a quicker taper with the help of Methotrexate. Hence the rock and the hard place. If in doubt do nothing. X

PS. GP doesn’t really understand all this and was shocked that I received a syringe and ampules in the post.

We have to get clued up and be our own advocates.

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Thank you for that. Will read and absorb the info tomorrow might have a question or two to ask them.

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My GP mentioned hydrocortisone but said its still a steroid. I’m all new to this steroid thing only every knowing about pred as this is the only one I’ve had. I’d like to be off pred as we all would but I would like to know how my Adrenal is working. I did say to the Rhuemotologist about some people I knew haven’t had to wait to be so low but she read the letter that the endocrinologist sent saying this is the way he works each hospital works differently. You mention an Adrenal crisis can you tell me what you mean and the pack too. I just know that through the day I fade in and out of well- being one minute I’m fine the next I could lay down on a kerb stone and sleep. It happens suddenly and I just want to get home and sleep. What is the sick day rule and how long do you double up for? Thank you for your input.

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The sick day rule is, as I understand it, if you become acutely ill with flu for instance, your body will be unable to respond to acute stress by supplying extra Adrenaline. The same applies to acute stress ( eg a car accident, a sudden bereavement). Therefore you have to up your dose to meet the need. A crisis would occur if you can’t do this. It is a complete state of collapse that can be life threatening. It is described in more detail on the NHS website, if you google it.

Hydrocortisone is apparently gentler on the bones but less effective in relieving inflammation.

I experience the sudden, swooning exhaustion that you describe. None of my doctors would attribute it to Andrenal deficiency, more just autoimmune diseases in general. I hope this helps a bit. The diagnosis of sluggish Adrenal glands has not really helped me, I’m afraid.

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This is why I feel so low not just because of pain, which don’t get me wrong is bad enough, but the lack of energy and the sudden demise of any strength which prevents me from looking forward to a day out or an visit from a friend. I don’t plan anything in advance as I worry about being out and getting this ‘I just want to go home’ feeling. I put it down to depression as I don’t know what else it can be. My thyroid is slightly out of kilter but not bad and I’m on thyroxine so under control. Even before PMR I would get tired easily but although I told the doctor when bloods came back normal it was passed off. I just put up with it. People would say pain would give you tiredness. One week I would feel invigorated doing the garden and spend hours out there with only what I call a normal fatigue other weeks its as if my life line has been cut. So with PMR medication, low Adrenal function I’m between the devil and the deep blue sea. Sorry for waffling but it’s a small bit of therapy that helps.

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You are not waffling at all. This is where we are right now. I do feel better when I’ve ventured out for a small, non demanding thing. When I’m flat out later it seems to really help to think, well at least I went there for a bit. I am on Thyroxine too and although the bloods come back “normal”, I wonder. Hang on to the memory of those days in the garden, they really, really matter. One day there will be more of them. 🌸

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They are very positive words and very inspiring thank you. I feel weak in mind so it’s very easy to give into things I must try and give myself a bit of a break from negativity. The next few weeks are going to be challenging getting onto these meds but knowing I’m not alone helps a lot.

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What is your Thyroid condition? I had Graves Disease, Exopthalmic Goitre and Thyrotoxicosis in the late 80’s. Eventually I had radio - iodine treatment that knocked out my thyroid function completely. I am currently on 125 microgrammes of Thyroxine alternating with 100 mics every other day. I will need Thyroxine for life. I don’t know what impact this has on PMR. The Endocrinologist was quite interested which kind of resurrected it as a concern for me. I know that in the early days I felt that it had made me flatter in mood and fatter in body. I wonder if It contributes to the fatigue now?However, lots of us complain of it without the thyroid complication.

I know from my own experience that doctors do not increase your dose if the bloods are within normal parameters, even at the low end. They are far more keen to have you a bit below par than risk your heart. It is tempting to think that more Thyroxine or more Pred will lift this awful foggy mood. I have come to the conclusion, in my case, that it just doesn’t and if it did there would be negative consequences. I do understand the feeling though, only too well.

You definitely aren’t alone and as we speak you are digging yourself out of this hole. I can sense it.

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I’m on levathyrizine for under active thyroid it’s not badly over the limit but as it’s not been stable for several years. I had a underactive thyroid several years ago went on meds and then was able to come off them. Then I found I was getting jittery trying to do things quick and in a erratic way so saw the Doctor he said it was over active so again had meds to sort it out and was fine for a while but about four five months it’s altered and I’m back on low levathyrizine. So it’s not severe but not normal.

Yes I’m sure talkie and understanding other people’s experiences are beneficial to me. If I can get over the next few weeks and settle on an antidepressant without feeling like death I might feel like I can tackle the hospital problems better without to much stress.

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Let us know how you get on. It needn’t be for very long, as this may be a blip. It is so wearying battling this thing and having your life turned upside down.

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On what grounds is it said to be under control? Pred suppresses TSH -so it may APPEAR things are ok when they are not and higher dose of thyroxine would be appropriate...

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By the blood test I had. I don’t know much about TSH and understand what is normal and what I’d not. My GP gave me the appropriate amount to get a normal reading it’s hard to contradict him.

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True - but I bet you would feel better on more ...

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Yes I think you are right....how can I prove that to the GP. Only have one month supply so can’t try it out

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See my reply to SheffieldJane below.

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I had no idea that Pred suppressed TSH. The GP has actually reduced my Thyroxine following my annual blood test. Can you point me to something I can read?

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You could try this:

ncbi.nlm.nih.gov/pmc/articl...

I have to say - I don't remember this post and it didn't creat much discussion but you are not alone:

healthunlocked.com/pmrgcauk...

There seems to be an assumption that lower doses of steroids don't affect the TSH so it is immaterial but I know a few people whose GPs insist their throxine dose is too high so they should lower the dose - despite it making them feel less well and their consultants accept that they need a higher dose to be clinically symptom-free.

Do either of you see a thyroid specialist or is it just the GP?

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I see an Endocrinologist but he’s focussing on my suppressed Adrenals. Thank you for the links!

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GP.

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Should I mention it to the Endocrinologist in May about my thyroid?

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I would.

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My rheumatologist said she will only let me have the Synacthen Test when I'm down to 3 mg for a whole month.

I trust her and I see many of her answers are exactly what is said here.

I mentioned to her about my Fatty Liver and taking methotrexate ...she was angry with myGP for not writing it down in her referral...

😱

I could have been in a right pickle had I started it. 😩

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This makes me wonder if I instigated my test too soon ( 6 mgs) and am therefore in a dilemma of my own making? Who knows, at 3 mgs the result may have been satisfactory.

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There are many conflicting opinions about how the test is even done let alone interpreted. I don't know this for sure ... I think getting down to the lowest dose possible under 5 mg is needed first. Then, one needs to hold the dose for at least 36 hours but preferably 48 hours. The waiting time is for due to the half-life of prednisone.

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Almost the entire dose of pred is out of the body in 24 hours - so to do the synacthen test you take your dose the previous morning and not on the day of the test so morning dosing is easy as the test is done at 9am.

The half life of pred is 1-4 hours (slight difference between prednisone and prednisolone) and a drug is excreted in 4 to 5 half lives, so an absolute maximum of 20 hours to get to effectively zero. The antiinflammatory effect lasts 12-36 hours, occasionally a bit longer.

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Any exogenous cortisol left in the body has an effect on the test. I have been told 24 hours is good ,,, 36 hours is better ,,, 48 hours is best. It seems some people have the test done without being told to hold the dose at all ... that some low dose is OK. Time of day, stress levels, interval between the blood draws and other factors also impact the test.

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My Endocrinologist states I have to be on 4mg or under for a succession of three monthly normal Adrenal test. Been on 4mg for nearly five months now. Rheumatologist write to Endo for a test he wasn’t interested only saying it has to be longer last visits I was getting wound up and she said perhaps if I saw him he’d be able to explain more. It was beyond her expertise. So no test just a meeting.

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Looks like it may have happened SJ.

I think this link may help others who may be contemplating to do this test in the near future.

Until I joined this forum I had no idea there was such a test.

patient.info/hormones/synac...

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Hi sorry to hear your in so much pain, while I've tried antidepressants in the past, not for PMR or GCA, but they always made me feel worse, but that's me,

I started with PMR and started with thigh pain, and neck pain, (shoulder pain came year later) and couldn't walk, and went on to GCA,

I'm down to 5mg went to 3.5 but upped it again because of pain in my thighs,

Shoulder pain and neck pain gone, but legs do feel like concrete blocks, and just pain and stiffness in thigh area. I do exercises for my legs everyday, well as much as I can ( even though it hurts) but pain would be worse if I didn't do exercise. ( I do relaxation exercises which really help)

I know I get so frustrated, and down at times, but grandchildren brighten my day,

I do hope it gets easier for you, take care

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Thank you. I’m sure it’s only part of my journey but a black hole is hard to climb out when you can’t see an end to it. I felt better today and that’s good.

I know what you mean I’ve tried many antidepressants but not recently and every time I felt bad mind you I think I was quick to dismiss them as it felt worse and never persevered for a good period of time. On this Fluoxetine so I’m hopping it will not make me feel too anxious as I was told by GP for first two weeks.

Only had upper pain neck, shoulder and upper arms but after just over two years I have had pains the backs of my legs. Is this what they call thigh pain I don’t know? It’s eased by upping my preds to 9mg will try to reduce soon so perhaps it is PMR.

You take care too.

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Jane just reminded me, cognitive behaviour therapy, is really good when your feeling low, I have worked on this and have learned it off, it's like it gives you the tools, so you know what to do when your feeling low, I would have dismissed this CBT years ago, but it really works for me, I know stress and worry make pain worse. Take it easy X X

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I had it in pain management therapy years ago but never learned it as you say’ learned it off. This sounds intriguing can you explain a little more please. If it’s some I can use I think I have a chance to improve my mood. Thanks you x

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Sorry for not replying, and do hope your feeling a bit better, I was away for 5 weeks, visiting my daughter and family, I was down to 2.5 mg but not pain free, and I've been taking ginger and orange for 3 years now, and when ever I go away I always have a flare, and not easy to have ginger and orange away, so I increased to 5mg, and I was not too bad.

You asked about CBT I Suffered with anxiety and I ordered the therapy on line, I think there is a lot of CBT therapies out there,

Basically it's positive thinking, and getting the therapy deep into your brain so you don't forget it even if you try, and relaxation exercises for 10 mins a day, it's all about calming yourself down, and stopping those racy thoughts,

Because it's a vicious circle when you have pain, your mood is low and pain is a lot worse and your just thinking negative,

When I was away, I had lot of pain in my thighs, it's mostly from groin ( which I did have lot of groin pain a few years ago but that's gone now ) down to my knee, I left it a few days, and you can feel your mood changing, but I increased to 5mg and I was ok, and I say positive affirmations to myself, while taken in deep breaths and releasing them slowly, and it repetition and reprogramming your brain to think positive. Believe me it does work.

Hope this helps,

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I have read a lot about pain in thighs by a number of members recently. I fell in early January so I assumed the pain in my thighs was from the fall; post 3 months, but the thigh pain is excruciating. Is thigh pain typical of PMR along with the more well known symptoms?

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I had thigh claudication - when I climbed stairs or tried to use the cross-trainer in the gym.I also have pain on the outer aspect of the thigh when the trochanteric bursitis gets going. It is sharp after walking for some time and then aches while sitting.

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Hi christophene47 I started off with thigh pain, and pain in my neck, pain in my neck only went last year, I was diagnosed with PMR and i was prescribed 20mg pred, and only when reducing, I went on to get GCA, but a doctor I think it was last year, said that he thinks I didn't have PMR, he seem to think I had GCA from the start, according to him thigh pain is more associated with GCA,

I know I'm never completely free of thigh pain, and when I have a flare it's worse, like have to increase the dose,

Hope your thigh pain has eased, and your feeling a little better

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Antidepressants are such a minefield. For some they work wonders, others don't get on with them. I have had them years ago. They are prescribed too in pain magagement a lot. They can make you very tired when you start so just be mindful of that if you decide to try them. Also they are not a quick fix. They take time to feel effect. If you take them for a while make sure you come off them slowly - some of them shouldnt just be stopped. Best wishes.

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Yes had Amitriptyline years ago for pain it made me to dopey which isn’t useful to someone who’s got tiredness anyway.

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Ah what a shame, I was about to suggest amitryptiline as I have this to help me sleep and personally find it a miracle drug. I have even stopped my bladder medication as that is not a problem when I take ami. Would a tens machine help? I try CBD oil (not sure if it does much - probably all in the brain). X

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If I don’t get on with fluoxetine I might try Amitriptyline again. You say a miracle drug in what way sleeping and bladder only or mood as well? Yes tried Tens machine it stirs things up to much. Not tried CBD oil I don’t really know what it is.

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Helps me sleep, wee less at night, and reduces anxiety at night. Cbd oil is available at holland and Barrett - it doesn't contain any "whacky" ingredients. Mindfulness helps too. Poor you. Virtual hugs on route to the county of my youth! X

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Thanks Pongo 13

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My experience with a TENS machine is that it was exchange of one unpleasant sensation; ie. pain for another; ie the feel of the machine. Unless they have newer types, you cannot use it on the front of the body for fear of dangerous shocking. I still have it collecting dust somewhere.

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Ha ha! You are right! An acquired taste!

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I LOVE my Tens machines. I have remote controlled ones, disposable ones, heated ones. I have fibromylgia too though so suspect my brain gets zapped in the sense that it confuses the pain signals. Most programmes i like at top setting. I always tell people to start it somewhere innocuous on the body. At the easiest (simple single repeated zap) on the lowest power setting and build up toleration. If you just stick it on the "sore" bit at the multiple​ shifting pattern zaps setting on full power it will freak you out and cause more pain.

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My memories of Prozac are pretty positive. I remember at one stage thinking everybody should be on this wonderful stuff. I was less of a worrier then though and the publicity for this sunshine drug had been very upbeat. I had no trouble stopping it after about a year.

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Thank you for your advice, I don’t know how to get out of this rut so it’s just a way to see if it helps. Having pain is one thing but having low esteem mental dispair with it is another.

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I agree totally. May be the nudge you need. Sometimes we go down a bit too far and need to try something to get over the hurdle. Good luck. Let us know how you go.

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Talking to your friends here, is doing more than you perhaps realise. We all genuinely care about you and know the place you are at. Cognitive Behavioural Therapy can help with those intrusive, unkind thoughts that occur. Mindfulness advocates acknowledging them and kind of nodding them past, rather than fighting them. Someone in my Mindfulness Course had multiple disabilities and had come to help deal with her chronic pain. It was a lovely thing to do. There may be a course near you. It is a gift for life. It has helped me with positivity ( sometimes) we all get overwhelmed occasionally. 💙

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Yes I’ve been through all the hospital courses for CBT and discussion classes on pain management but a while ago. I’m under the pain clinic but for back pain not PMR but not getting much support at the moment. Being here has taught me a lot and is a comfort. I will have to look into a mindfullness course thanks got the advice

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You are so right. Self esteem suffers a lot with PMR. If taking Prozac could bring that back, even for awhile, wouldn't it be worth it? All people react differently to different drugs. But give it a good go; you can stop it if it's not working for you; do remember, antidepressants take weeks to months to start working, so don't give up and get that self esteem back in grasp.

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Thank you. I’m not getting on well at all nearly a month on Prozac and I feel dreadful. Stomach pains and nausea my appetite is non existent and the levels of jitteriness inside my body is distressing. I feel so lousy I don’t want to fo out now. Going to see Gp tomorrow if this is what it does for me I think I’m better on my own.

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You have my sympathy - my lovely pain lady left about the same time as she had sorted me out the first time round so I knew I had the choice of going to her privately or seeing what was now on offer. Her replacement is very nice but I think it was only about the 4th visit that we got on a wavelength. Her predecessor's technique and approach was more my "thing" but the very much more tentative approach now is getting there.

I do often say to people that at least trying antidepressants is often the way to go forward - inflammation and depressive move are closely intertwined and sometimes pred alone isn't enough. If a pill makes life more worth living - then take it and then work on other approaches if there are any.

And consider a scooter maybe? A gentleman on the patient.info forum years ago was sinking into a dark place because he could no longer walk along the coastal path as he simply couldn't get up the hills. He got an off-road mobility scooter - and sang its praises on the forum. Being able to get out in the fresh air to his beloved pastime gave him so much pleasure he said how much he regretted not having done it sooner.

OH is beginning to come round to the concept that he isn't getting significantly fitter - so he doesn't go out because he is so knackered when he gets back. That impacts on me too as I have to do more and I have suggested several times that if he had a folding scooter we could go for proper walks and get further because we could share the driving! Not to mention go somewhere that isn't entirely on the flat!! Not easy when you live in the mountains ;)

PS - I was on fluoxetine years ago, in the days when there was only Prosac. For me it started to work in a very short time - but Prosac caused me no side effects, with generic I could barely talk as my mouth was so dry. Some might say that wasn't a bad thing ...

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Good idea for a scooter, but be careful with light folding ones, they aren't so stable!.....don't want you and OH having added problems!.....just a thought....

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The one I've seen was very good - for up to 150kg and both of us together doesn't come near that!!!!

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Perhaps you could stand on the back when you go whizzing down the hills....might be a bit harder going up though!😉

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It comes with a trailer - that can be for "stuff" or a person!

travelscoot.com/accessories...

The guy who invented it is from Bavaria - gentlemen there are LARGE!

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That looks good...more balanced, my niece had one with small wheels, sometimes tricky turning corners etc...she thought it might tip over. You could sit in or on the back!

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Photo please if you sit in the trailer 😂

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Are you sure that one of you would be able to lift it into the car? Although not massively heavy -I couldn't. OH could, but at 83 it's getting more and more difficult, and it's not the sort you could get a "lift" for I should think.

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Oh yes - it is designed for that and folds like a childs buggy. I think I sent you the link originally. Because it is light it needs a smaller battery which is detachable - and that makes a lot of difference,

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Just thought! We did go into it a couple of years ago (on your advice) and felt that it was STILL too heavy to deal with regularly (even the battery is relatively heavy)! However, you are a good 10 years younger than us, so that would make a big difference.

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It is about the only one I'd consider at present - simply because of the portability. If I can't lift it then I won't be able to use the campervan and travel anyway!!

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As we now have a garage I bought a 6km one. After a year I am updating it to a 15km one. The 6km is alright round the Spa but if I want to go further it's a drag (I feel I could walk faster - I couldn't of course - I can't even walk 1 km at about 1km)!😂😂

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Not a bad thought! Mine isn’t a folding one (a 6km ph) but it doesn’t like heavy winds.

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Thank you for your comments. When you are low things like a change of consultant is another thing that feels like it’s the end of the world. It was my previous pain consultant that I’d had for 20 years retired last July he had got me through the deterioration of my back problems and also diagnosised my PMR by me just mentioning symptoms I had 2 1/2 years ag. He did pain procedures injections and frequency treatment acupuncture etc he was a very compassionate gentleman and never hurt me in any way but my new consultant is much more gung ho about things and I have had two procedures done with him which have caused me much pain in fact I was so distressed with the way he was last time I ended up violently shaking and near to tears in the theatre and that was under sedation which I swear was lemonade because it sure had no effect of relaxing me. Normally I’d be able to cope with this but my mood is so low obviously, that things are on top of me now. Just to top it all my DLA is finishing at the end of March and I have to apply for PIP another thing to stress about especially when it was hard enough to get the first time round. More form filling and interviews.

I’m hoping I will get on with the ‘prozac I will give it a go its good to know that it worked for you. I’ve tried a few over the years but they made me so ill to start with I thought it wasn’t worth it. I tried Sertraline a few weeks ago well I slept 20 hours a day couldn’t walk straight, dizzy sick and felt like death warmed up. The doctor tells me every time i will feel really rough for at least a couple of weeks before they kick in. Not what you want to hear that blows your mind before you even start. You made me laugh about your dry mouth with the generic version.

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Is there no other option as pain consultant? And yes, I do realise that would require a lot of courage too.

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That’s a difficult one but has to be considered

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You have all my sympathy, relentless pain is very debilitating. Just a thought, how long is it since you had bloods checked? I developed anaemia very quickly and the only symptoms were tiredness and pain down the front of my thighs. All good wishes.

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I’m anaemic too. What with PMR, POA, etc as well it’s difficult to get motivated.

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It’s the etc which causes me most problems, the staff on the front desk at the hospital think I work there. 😂

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Only a few weeks ago. All levels were reasonable I’m not anaemic. It’s obviously my Adrenal function it was 37 when I asked the Rheumatologist what that meant she said the normal was 200. Thank you CT-5012

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I know exactly what you mean. I am the same way. 2years 3months into pmr and 20 years of fibro. and a lifetime of a bad back. I have not taken the antidepressants. I know how groggy they will make me. Up til now I have opted to be in pain instead of groggy. I have changed my mind and decided I am going to try more drugs. There isn't anything else the pain dr. can do anymore. So meds it is. Let us know how you fare on this drug.

Take Care

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Thank you Linny3. Yes you sound like me but being with long term pain grinds you down and having PMR was another nail in the coffin. I think I have got to get my act together I’m not motivated to do anything, don’t want to go out and socialise. If I do do something I’m so fatigued that it’s hard to function. It’s okay if I’m home but if you are out it’s a different story. It’s very difficult to know what pain comes from what conditions, back, arthritis or PMR. At 59 I think can I continue like this for the rest of my life.

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I went for first sssessment with chiropractor this week and he asked which bit of my body he should start with! I was genuinely lost for words! As you say - Really is difficult to choose where pain comes from. Never been to chiropractor before so fingers crossed!

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Good luck with that I hope you get on with it okay. As long as they are gentle with you otherwise it will be too painful. Lol I know what you mean it’s hard to tell someone where it hurts. Best wishes.

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Good luck with the chiropractor. Seeing a Chiro. got me thru the early days of fibromyalgia. I can't see one now. With the osteoporosis and other back issues no one will touch me.

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I am like you. My pain is controlled with meds, but no motivation at all and prefer staying in and still; for a once very capable nurse-attorney, watching TV and reading is a big come down. But at almost 72, it's not so bad. Comparing the past to the current in our minds is what's bad.

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It’s so very hard when your life changes dramatically and you don’t know how to change it. Like you I am much more at home and I don’t mind I have a good husband and a black Labrador that I adore. But it would be nice to see the ‘lightk occasionally.

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Good morning Linny 3,

I am 17 months on Prednisone for PMR and a 22-year fibromyalgia patient along with a host of other health issues age 56. I have been on anti-depressants almost all of my fibro career LOL. As fibro is a cycle of pain, sleep and depression, Anti depressants are truly a necessity to manage. I can honestly say I have been on just about everyone that exists over this time.. many have various side effects though must be given a good trial usually a month or so as they settle down. Not to say this is the same for all cuz I have experienced some bad ones. But I found the one for me after much trial and error that works I have been on for 7 or 8 years. Pristiq a generic came out within the last I believe 2 or less years though I remain on the brand with literally no side effects of any kind for me. Urge you to do your research and give it a good shot. I believe you will find what works for you but it may not be overnight. Good luck, Janet

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Thank you so much for your reply. I will look into it. I have never wanted to take any of these as I am super sensitive to everything. But, the time has come I need a little help.

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I am so sorry to hear about how you feel.

When our physical pain becomes mental pain because we have suffered so long it is hard to bare.

And if you have had issues with other medications or are fed up of relying on drugs just being stuck on a new one , rather than getting more practical help for your problem is frustrating.

And a practical problem it seems to be.

You are not getting quick or organised help because of lack of good communication between hospital Departments .

You new Pain Doctor is either not reading your old notes from your previous Specialist and not listening to what you say.

You aren't getting regular enough pain appointments to help your through this few months.

And , unfortunately , they seem to be using a " belt and braces" approach concerning your Adrenal tests , giving for their needs a fine set of results to prove your needs but leaving you waiting for confirmation adrenal function to improve without assistance.

In my opinion , if you can , or you can give instructions to someone to advocate for you , some calls to these Departments to request appointments and information are needed.

You need to get back into Pain Clinic urgently , phone for an appointment to get more help and ask your new Doctor to listen to how your pain is affecting your mental health , and how certain things he has done so far have not helped , and other things you had before would work better for you personally.

They need to listen and only give you help that works for you.

Finding a Counsellor , by referral from the GP , who help with therapy for those with chronic illness will help. They also give you exercises to improve your mental strength and help you cope with pain.

Explaining to the Endocrinology Department , via the secretary , by phone the level of tiredness you have and its effect on your mental health and requesting a quicker appointment will help to . You can ask them to do the scan then , as waiting is not helping.

Try the drugs once you check its contradictions , it will be a prop until you get other things in control.

If it doesn't improve , keep posting for more advice.

Take care , Bee xx

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Hi Bee. That was a great post thank you.

Unfortunately as my Pain Consultant secretary explained when I rang this Wednesday Consultant is booked up for the next six weeks. I am on a cancellation list. They have a list that they work through apparently it’s not like the good old days. As I explained to her, and I was trying to keep my cool, I had a coccyx injection at the end of Oct and when left the ward I was to have a 8 week follow up but then I got another appointment for pulse frequency treatment just before Christmas same thing 8 week follow up. But when it never materialised I rang and got this explanation of the system. I put my urgency to her but she said she’s unable to do anymore I will get one eventually but when who knows.

I certainly will tell the consultant how I felt. The way he did the procedures was different and not they way that worked for me. My last Consultant was so gentle but this one wasn’t. I told him my sedation didn’t work the pain was agony (it normally dulls the pain a makes you woosey) he said I need to be awake to find the right area. I’ve had the same procedure 6/7 times so I know what to expect. I was made to wait for him 20 mins on a narrow operating table for him to arrive on my front gown wide open ready. I felt in pain exposed and frightened. My shoulder went into spasm that made things worse. I could go on. I can’t say I dislike him but he has a different approach but I will tell him how I feel. I can only wait for an appointment as the secretary said they are stretched to the limit.

As for PMR and Rheumatology I’ve not been offered a test by the endocrinologist it was suggested I had one but the Rhuemy but when she wrote he said it’s pointless doing one above 4mg and I’d have to be on that level for a while ( been on it since end of November) the results won’t be correct otherwise. What do I now I can’t make him give me one. In the end the Rheumatologist said she’d send me to the Endo so he can at least explain it better as it’s not her field. Appointment is on the 7th May. It seems if the Adrenal function isn’t good I have to up my predisolone but as I tried to say to the Rheumatologist I’m taken pred for PMR not to support AD function she said yes I know that but that’s what will improve it. Duh!

I wasn’t aware of counselling via the GP for chronic illnesses that’s worth thinking about. I’ve always had support from the pain clinic but I wasn’t depressed then so thank you for that Bee. x

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Thank you for the extra details.

The way you have been treated at your Pain Clinic appointments is terrible , but unfortunately often the case . A Department can seem brilliant with one Consultant , but the next can have an attitude and methods that escape description.

This doctor treated you without consideration and arrogance , and has not taken into consideration the way the pain relief was better administered to you , or how his treatment delays on that day would affect you mentally and physically.

You have the right to complain about this treatment with the PALS service , and request a different doctor and swift second opinion.

Your appointment may still take a similar amount of time but you will at least have the chance to see someone else and not have the added stress of treatment from someone who has already increased your anxiety and pain.

As Sheffield Jane says , dealing with the Adrenaline issues can take time and unfortunately cause you a period of extra pain. When you return to the Endocrinologist you may need to remind them of your other pain issues and current stress levels , it may make a difference to the route they choose for treatment in the future.

There are also many other types of antidepressants and anticonvulsant medications that are used in pain relief as well , for those who suffer anxiety or insomnia as part of their symptoms. As has been said above , none are a quick fix and should be begun at the lowest recommended dose then increased to the dose you require to prevent the worst levels of side effects of dizziness or tiredness happening to you. They can take sometime to improve your mood too , but if your mood gets worse on them it is good to speak to a GP and change your medication.

The Counselling service is also used for people whom suffer with PTSD after recovering from illnesses like Cancer and Major Surgery. There may be a long wait. In which case you may want to consider a few visits with a private therapist with experience of helping people coping with Chronic Pain. I know that my Mother found this sort of help very useful and it improved her ability to cope far more than her antidepressants do.

Take care , please let us know how things go.

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Yes I had great faith in my pain clinic over the last 20 years but things change and they have not got the same care they had. They are very understaffed and our hospital has merged with another which was in special measures so things are not as swift as they should be. I will not let thing slip but put my feelings out there the way I was treated but I’m not holding out much hope for massive changes. All that will be said I’d an apology. I know about PALS but my neice in law is the head of that and with an family rift I don’t really want to approach her. If I had to I would but I think a talk with my consultant would be more beneficial. Unfortunately there’s no pending appointments available so I don’t know how long I wil have to wait.

I’m going to see how I get on with the antidepressant I am on and play it by ear there’s so much going on health wise it would do a normal persons head in so when the body isn’t working effectively it’s just stresses me out beyond what I can cope with. I have thought carefully before I went done this route of antidepressants but if it gives me a better quality its worth a try.

Thank you for your advice and support it really helps to talk. Take care too.

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Following. I suggested going on Fluoxotine to help with the emotional spiral when coming off the steroids. Does it help?

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Let you know if it works

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i don't know the generic name.. but I used zoloft for a year as an antidepressant and felt it worked wonders!! this was fairly long ago but I was able to really see how my thinking had spiraled in comparison to how I felt on the drug. And I have, ever since stopping the antidepressants (I had bad headaches as a side effect) been able to apply a technique to "get out of the rut" is the only way I can describe it. I say Yes absolutely to giving the antidepressants a try. (also, if you like, use my Relaxation online..just for a break from the stress of EVERYTHING! some find 61 points helps with pain and otherwise the last one is a good one to get rid of stress. And of course the exercises do help! sites.google.com/a/apps.hop... )

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It’s so difficult when trying new antidepressants you already feel in the pits and to go through the two week period of feeling rougher in yourself to not know whether you will come good the other side is hard. When do you say this isn’t for me and stop? I am on day three of fluoxetine and feel dopey and passive at the moment with a mild headache but better than when I was on Sertraline that was dreadful. I will look at your link thank you.

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When I took zoloft I felt better about 2 days in. It worked quickly.

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Zooloft is sertraline

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Well that’s one out then tried that and made me so ill

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Just had another thought - I have a colleague with chronic pain and she attends a craft group specifically for anyone suffering. She says this combined with meds really helps her. Might be worth seeing if there’s something local to you x

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I was in the same place at 2 1/2 years as you are, really hurting. I decided to up my pred to about 22 for a couple of days and slowly come down. I knew I had to finally get the inflamation out. I had no life and hurt! I am now at 5 mg. and it is a whole different world. Maybe you need more pred?

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I have used an antidepressant since late January 2019 after my daughter said go for help MOM you have all the signs of depression. I was weepy and lethargic...weepy the most disturbing since I am not a weepy person. Life is certainly easier with the antidepressants and doctor says use them for 6 months and we'll see how you do. Motivation, interest, sleeping, cooking, social has all improved since the antidepressants......make the move, acknowledge you need help and get it ASAP Life is too short to wait longer. My best to you.

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Yes trying Fluoxetine third day but I feel worse very nervy and strange inside it’s getting through the first few weeks that’s the trouble as life has to go on and you try and act as if you feel fine. What was the antidepressant you had. I just want one that I can take and not go through the rough stage but I don’t think they exist. Glad you are feeling better it sounds positive.

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My antidepressant is called escitalopram one table once a day. I take it in Am with pred. 10mg. Experience no side effects that I registered...was just glad life became easier.

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