Update to anyone interested

[Creas]

Hello, still in pain and still struggling to get a correct diagnosis.

My long awaited referral with a specialist Rheumatologist in Oxford lead to yet more insistence that I have fibromyalgia. I don't have fatigue, brain fog, depression, any stomach disorders...just pain in the neck, girdles and legs. They've tried me on two fibromyalgia pills (antidepressents which supposedly also help nerve pain) - Gabapentin and Duloxetine (having previously tried me on Amitriptyline).

Gabapentin had no effect on me except making me very sleepy. At least I had a few good nights' sleep. But I stopped it after a week and just took ibuprofen. My GP then put me on the Duloxetin that the 'specialist' had also recommended - one pill per day.

Day 1 - took pill at 10am and within two hours had nausea and felt dizzy. Didn't sleep at all at night so woke feeling exhausted and very down. By later in the day, I had severe diarrhoea. So basically I got all the symptoms of fibromyalgia that I hadn't previously experienced! The irony...

By day 4, I woke up and couldn't face taking another pill. I still had severe (water coming out of bottom all day) diarrhoea and the other side effects hadn't decreased much yet the pain relief was negligible except that the 'sciatica like' pain in my legs went away. I didn't take any more Duloxetin but took a couple of cheapo (60p / pack from Lidl) Ibuprofen and coped.

I found I still had v.bad pain in the early hours of the morning and woke in agony so started taking some old Naproxen I had lying about since they last 12 hours. Two of them before bed. And that is now how I'm coping. With a couple of ibuprofen during the day if I'm going out or in pain. I notice the pain is worse when I eat a lot of cheese and have read on naturalistic sites that dairy can exacerbate PMR so may try cutting out dairy.

It is now day 7 and I'm still waiting for the results of an MRI scan of my lumbar/sacral spine - I am supposed to have another appt with my GP when that comes in but it's been two weeks now and still waiting. So he doesn't yet know I've stopped taking the Duloxetin.

It is interesting that the excruciating leg pain went - it has not come back since I stopped the Duloxetin 3 days ago so perhaps I shouldn't even credit that drug with removing that pain. Possibly just a trapped nerve but it was because of that pain that the Rheumy booked me the MRI scan.

Now I'm back to the neck and both girdle pain that I had back in October last year - I am more certain than ever that it is PMR while the GP and Rheumy fanny about with their fibromyalgia label and do their best to deny me steroids which I know from my Cyprus adventure last Autumn relieve the pain.

My ESR and CRP readings are relatively normal, that is how they justify their position. My neighbour who is a retired doctor also has PMR and they didn't want to give her Pred but she insisted and ended up going private and has given me the phone number of her pte Rheumy. She had identical symptoms to me. She had PMR for 5 years and is now coming off the Pred. I will ask for a second opinion if my next meeting with the GP once the MRI scan comes through isn't satisfactory. I'm pretty sick of all this pain!

[piglette]

I went privately in the end after months of pain and within twenty four hours of taking the steroids I was back in the land of the living.

[Creas in reply to piglette]

The irony is that - such is our trust of the NHS - my husband ordered me 3 months supply of Pred from the internet (South Pacific!) so I could self-diagnose but I'm currently trying to go along with the NHS nonsense. But I do have a huge batch of pred in the house. I would have gone private sooner but I wasn't convinced it was Rheumatology and I feared being passed around and spending a fortune we don't have for something that might turn out to be neurological or hormonal.

But I'm pretty certain now it's PMR. My grandma had it and took steroids and it went away and she had no side effects. What's the big deal?

[DorsetLady PMRGCAuk volunteer in reply to Creas]

Your choice of course, but not sure you should be buying Pred off the internet and taking it with no medical input to check for any side effects…

[piglette in reply to Creas]

personally I would not buy tablets off the internet. I bought glucosamine once that looked fine and then discovered they were not what they were supposed to be.

[Daffodilia in reply to Creas]

Go private - can always go back to nhs with diagnosis

[Loyd in reply to Creas]

My advice would be to do as I did when I was in the exact situation as you. All the pain but no high inflammation markers. I was offered pred from a friend and I took it for a week - miraculous cure so went back to the doctor admitted my sin and she agreed it was PMR I had and put me on 15mg daily. I got my life back. Down to 3mg now and going very slowly. Have had it for 5 years. Good luck.

[DorsetLady PMRGCAuk volunteer in reply to Loyd]

It may have worked for you… but it’s never recommended to take someone else’s medication, even for a week…

[Loyd in reply to DorsetLady]

I totally accept that it is not recommended to take someone else’s medication but this lady had said her husband bought pred on line and she has heaps. I was merely saying in my opinion it would do no harm to try 15mg daily for a week if her doctor (like mine refused) to prescribe pred as a diagnostic tool.

[DorsetLady PMRGCAuk volunteer in reply to Loyd]

I know you were only try to be helpful, but we regulars know that we get our knuckles rapped if we suggest anything like that… that’s all.

[Loyd in reply to DorsetLady]

Sorry I’ll be more careful in future.

[DorsetLady PMRGCAuk volunteer in reply to Loyd]

Didn’t mean to come across too heavy.. but we do have to be careful what we say…… okay to say what you did, but not necessarily to suggest others do the same… subtle difference - if you get my drift.. 😊

[Loyd in reply to DorsetLady]

I do definitely see the difference. 👍👍🙂

[PMRpro Ambassador]

I find the refusal to see for themselves what pred does for you quite surprising. But you do have to be careful who you see - some want everything to be fibro because they are so scared of pred.

[Bcol]

It's all so daft, they are happy to give you other powerful drugs but so unwilling to give you, even a week, of Pred to see if it actually does the job. Such an easy trial to undertake, I really do despair of some in the medical profession.

[PMRpro Ambassador in reply to Bcol]

Exactly - look at that cocktail being offered to a patient who has reported they get relief with pred. Pigheadedness ...

[random901]

Hi Creas! I was told I had fibro for over 10 years before GCA and PMR symptoms were investigated. Only to be told I'd probably had the latter two "for some time"! Pred brought immediate relief. Amytrip did nothing apart from making me feel peculiar so I stopped it. Hope you get some joy from private Rheumy if you take that route.

[Creas in reply to random901]

I tried to like your post but it went from zero hearts to minus one heart so I removed my like!

[random901 in reply to Creas]

Sorry, don't understand your comment ...

[DorsetLady PMRGCAuk volunteer in reply to random901]

If you tap the heart icon under someone’s reply…. The number in brackets changes - it increases … if you tap it again it goes back to previous number ..

[random901 in reply to DorsetLady]

oh. must hav been extra foggy!

[benhemp]

For what it's worth: I too had diagnoses of PMR and fibromyalgia, as well as PsA, though, like you, my ESR and CRP values were in the normal range. Two weeks after switching to a carnivore diet my neck, shoulder, and pelvic pain were reduced by 80%. Now at the five months mark, my PMR symptoms are all gone; no pain, no stiffness, no limited range of motion. I gave carnivore a try due to encountering many testimonies of people being helped by it and the confirmation of the 2021 Harvard Medical study that interviewed 2300+ carnivores, but also because I couldn't get a rheumy appointment closer than 3 months out. I'm not saying it will work for you, but it is an easy thing to try. I was told I would know if it helped within a month, but at 2 weeks I could already see a huge reduction in pain. Just my experience . . . carnivore may or may not work for you, but you may wish to give it a try; it's the only way to find out.

[Creas in reply to benhemp]

I will google this, but definitely interested; I began to suspect dairy was making it worse indicating perhaps how important diet can be. Did you just eat meat only?

[benhemp in reply to Creas]

I started by limiting myself to only animal products (meat, with beef and lamb preferred; but also pork, poultry, and fish; eggs; and cultured dairy like Greek yogurt, sour cream, heavy cream, and cheese). I have avoided milk because it has lactose, a sugar. That was enough to eliminate my PMR symptoms. I have since added some non-carnivore things one at a time to see how I react; I now eat avocados, mushrooms, onions, hummus (limited to two teaspoons), almonds, walnuts, kale, collards, and 85% dark chocolate (in moderation). I have experienced flares of pain from the following: cookies (just 1.5 chocolate chip cookies!), white rice, and broccoli (in quantity). My thinking at this time is that, carnivore, being ketogenic, is the key to relief for me; enough carbs to bring me out of ketosis will make me flare. But I am not certain that that's the answer; PMRpro on this forum thinks I may have found relief by eliminating certain foods to which I allergic (and I don't know which ones those are yet).

I recommend giving the 2021 Harvard Medical survey of 2300+ carnivores study a look. I had heard carnivore testimonials from Shawn Baker, Joe Rogan, and Michaila Peterson before I found the Harvard study, which is what convinced me to give carnivore a try. Though I still have other autoimmune conditions (PSA, RA, Sjogrens) which may be slowly improving (not sure yet), I got complete relief from PMR, which was my worst source of pain. This has made it so that I have no need to take prednisone, something for which I am very grateful.

[Pixix]

I have fibro (& PMR) & onky tolerated duLoxetine for 48 hours. The side effects were horrendous, i trialled both Pregabalin & Gabapentin & could take neither. But if the painkillers you are taking are helping, then who knows. Perhaps it’s both? If I could choose I would have fibromyalgia. There’s no miracle cure, like steroids for PMR, but it’s an easier thing to deal with, I find. Amitryptylline helps me at night to get my muscles to relax a little.

[Creas in reply to Pixix]

I got the impression that PMR does eventually go away for most while doctors look at me shiftily when I ask about Fibromyalgia and say 'you just have to manage it' (ie. take pharma products for the rest of your life?). I wouldn't touch duloxetine again whatever I had - horrible drug.

[Pixix in reply to Creas]

I have found nothing to help my fibromyalgia at all, as I can’t tolerate the medication. I believe some people do take medication for it after diagnosis for the rest of their lives, but it’s a choice!! No, I’d never touch duLoxetine again, either, but the drug helps a lot of people. I’ve had PMR for over 4 years, & it’s not gone away. But I’m down to2mg steroids at long last. I also have trochanteric bursitis in left side & sciatica in right & a benign tumour on my spine, so have difficulty, sometimes, indetermining which condition is causing the pain…often it’s a combination!!

[Creas in reply to Pixix]

I'm sorry, that sounds like a right lot of pain - does the 2mg keep it to a reasonable level?

[Pixix in reply to Creas]

You have to be able to define which disease the pain is coming from, that’s the key to treating it! But now I have Polymyalgia Rheumatica, Fibromyalgia, Raynauds Syndrome, Osteoarthritis, Hypermobility, Essential Tremor, Vertigo, Trochanteric Bursitis, Haemangioma - spinal, Sciatica, Orthostatic Hypertension, Blepharitis & macular Degeneration, it’s tough some days to know what is causing what! The 2mg is keeping to polymyalgia under control most of the time…as long as the stiffness is definitely coming from the OA, & the pain is coming from fibro, Bursitis, sciatica, etc. I’ve also ‘weathered’ four car crashes along the way. I take tramadol time release, & have buprenorphine patches to help with pain from the other diseases. But, yes, I’m still often in pain as I lead a busy life…I sealed our new patio on my hands & knees the other day, & expect that to affect polymyalgia, fibro, osteoarthritis, Bursitis & sciatica. See what I mean? Hard to know, really. Then I dislocated my ankle (hypermobility…it happens) falling off 5he rockery last week, so that’s strapped up & painful. It’s a juggling exercise, really!

[Sophiestree]

if you can afford to see the consultant your neighbour has seen then I would jump at that. They will write to your GP with their recommendations and write your prescriptions from that. .

[Creas in reply to Sophiestree]

I might well do that, thank you. I've just had a spa day and the pain in my legs has since improved a lot over the last 3 days since the spa day (alternated sauna/cold shower a few times to get the circulation moving, swam very gently round the pool once - shoulders too painful to do proper breast stroke so I did a slow version - and had a deep tissue massage. I think the massage in particular helped the legs/hips but not the shoulders which are still awful. I'm only taking Naproxen at present; it doesn't do much for the shoulders. I'm obviously not playing tennis again yet! My right shoulder is now much worse than the left (which is where it all started) and I'm right handed.

[Creas]

I'm not sure how best to add a further update so I'm adding it here. My MRI scan showed disc degeneration in the L3-L6 region with particularly bad degeneration in between L4/L5 (and narrowing of the holes in the vertebra through which the nerves travel to the legs) which the Rheumatologist said will be causing the nerve impingement that was giving me sciatica like pains which made moving excruciating, and other thigh/bottom pains which made getting up or walking very unpleasant. He referred me for physio but I can't access the link the outsourced physio people sent due to my NHS login not working so it's still a mystery to me and I just keep taking the pain killers and not moving more than I have to as the pain killers don't relieve the pain enough to make me want to move.

I didn't really like the Rheumatologist - although a professor, he had no interpersonal skills and came across as arrogant and supercilious. From my only appt with him, I felt he'd already decided what I had before he saw me. He requested an MRI of my lower spine and totally ignored the neck, upper back and shoulder pain ('rotator cuff disease'). The pain relating to the lower spine now seems to be much better (no thanks to him) but the shoulders are excruciatingly painful and nobody even now has offered even a scan for them (it's been a year and dressing is still a struggle).

He's the one who prescribed gabapentin and duloxetine neither of which worked. What I want to know is - to whom are such consultants accountable? Does he know the drugs he prescribed didn't work, had awful side effects? Does he know I'm still in awful pain specially relating to the part of my body he didn't recommend a scan for? Does anyone consider if his diagnoses are accurate or are consultants just little gods, accountable to none but themselves?

[Creas]

I have an update: I managed to get a second opinion from a Rheumatologist of my choice (an ex GP who had PMR 5 years ago recommended him). There was no likely chance of this happening on the NHS till I really had enough and told my GP I was self medicated with Pred I'd bought on the internet and that it was the only thing that worked for me and that I felt I'd got my life back after all those fibromyalgia pills which didn't work and had awful side effects and then ever increasing doses of naproxen at night and ibuprofen by day (my hands went numb and became visibly swollen - I just stopped all pills that day and went nearly two days with no pills at all after which I could bear it no more and took the pred I had in my stock cupboard.

This lovely Rheumatologist said he thinks I have polymyalgia and my left shoulder is frozen and needs an injection. I imagined the usual crap: 3 weeks to get a date then a few months till the injection but he said can you take your jersey off and sit on the side of the bed there and did the injection right away. The effect was fabulous. I had no idea the previously undiagnosed frozen shoulder could have been responsible for so much of the pain (the other shoulder: the pain travelled right through the whole pectoral girdle with pain in the clavicle area).

He also prescribed me a large supply of 1mg and 5mg pills for me to very slowly taper off over the next year or so. I was on 10mg for the last two weeks since ditching the other pills but I'd halved my morning pill for the last 3 days (starting prior to seeing this nice doc) so was only on 7.5mg. I didn't notice any difference though I'm not keen to lower the night dose as that's when the problems build up. And I won't reduce at all for a month now and then half a mg only as I know this is the level where one's adrenals have to start kicking in which doesn't happen suddenly.

Incidentally he asked if I had a family history of PMR. That' s something I'd told my GP but he didn't seem interested while this Rheumatologist was very interested and also asked if I had a family history of thyroid problems. My mother's mother had both. Amazing she got the polymyalgia diagnosis back then - must have been about 25 years ago when she was in her 70s. She recovered after a couple of years of pred and lived to be 98 with no major health issues apart from using a stick to walk.

[Creas]

(Incidentally, the good Rheumatologist is called Joel David - he has a private practice in Summertown and I think he is also Harley St. but I got to see him at the NOC in Oxford on the NHS thankfully).

Also worth noting, he did say my inflammatory markers are NOT normal. My ESR (as of late Feb) was 33 mm/min and CRP over 6. I look forward to seeing the letter he'll be sending me and my GP and will post more if there's anything of interest in it.

Such a joy to see a decent doctor - another time I'd go straight to him. Well worth a couple of hundred quid specially now I see how much he can do during one appointment; it wasn't hurried at all - I was there for nearly 40 mins including getting the shoulder injection.

[PMRpro Ambassador in reply to Creas]

I've heard that name before I think - doesn't someone else see him and he supports a very slow taper?

[Creas in reply to PMRpro]

Yes, my neighbour who is a retired GP used him and recommended him to me. I don't know if she's on here or not. He's known for his long, slow taper - neighbour had mentioned this to me before I saw him.