Lots of strange symptoms?

[ValleysBoy]

Hi again All.

Since last writing I have developed a lot of strange symptoms which I have never experienced before. I am not sure if they are down to PMR or something else.

For the last month or so I have stayed at 10mg of Pred.

Of all the symptoms that I have experienced the worst have been in the last fortnight. It started with shooting pains in my left hip which went down and across my upper leg above the knee. Over the next few days the same pains moved into my groin area and then to the other side upper leg. I suffered neuropathy in upper legs and also in my arms.

I got in touch with my GP who agreed to physically see me and he did the usual Neurological tests but could find nothing wrong with my reflexes etc. And so sent me away with nothing.

Over the last few days the pains intensified across the back of my pelvis and the neuropathy and shooting pains continued in both upper legs and groin area and a deadening pain spread to my lower back. I got a phone appt with another GP who agreed to give me amatryptaline and Z-Pain tablets to see if they would help .

The Z Pain tablets actually stopped the shooting pains which was wonderful, when I could take them. But the effect soon wore off.

I have been taking one amatryptaline tablet each night but apart from making me sleepy, (for which I am very grateful as I have been suffering from lack of sleep for most of the summer), I have not noticed any real improvement.

Yesterday I felt slightly better having spent most of the day laying down. But from nowhere I got serious pains in my hands. Especially the thumb on my left hand and two middle fingers on my right hand.

I woke today to an improved level of pain in my hips and upper legs but still neuropathy in my groin and dull aching pain across my lower back.

But both my hands were suddenly very painful, all digits, to use and even to touch. I have also developed some small groups of spots on my hips.

I have read around on the PMR site and wondered if it might all be being caused by a trapped nerve or possibly even shingles but nothing seems to fit.

I am due to double my amatryptaline dose from tonight.

One final thing is that before all this happened I suddenly had 3 or 4 days where the shoulder pain just disappeared and the hip pain got so much better. I was so pleased as I thought maybe PMR was going to start to go away after 2 years. But it then came back with all these other complications.

Can I ask do these symptoms make and sense to ther people on here?

I have a face to face appt with the Rheumatologist on the 14th and would like to make sense of the symptoms so I can put them to her succinctly when I see her if possible.

Many thanks

Steve

[cycli]

sounds to me like PMR is up and you need more pred. but others who know more will advise. Usual hit your knee with a hammer and send you home because you have some response. Nothing is simple with this disease and its ways of surprising one when least expected are too numerous to list.

[ValleysBoy in reply to cycli]

HiThanks for your reply. I have lots of pred so maybe I will try doubling the dose for a week to see if that might help. Just need to cope and get through the next few days to the appt with the Rheumatologist. Wish I could understand where these new symptoms have come from.

Thanks

Steve

[Bailybiscuit]

It sounds a bit like me. I was diagnosed with pmr in 2014. I couldn't get my steroids below 10mg so my gp sent me to a rheumatologist. I also had strange symptoms a bit like you described. I saw several rheumatologists and each one diagnosed something different. I have eventually been told it is Sjogren's . I still get strange symptoms even though I am on steroids, methotrexate and Imraldi .

[ValleysBoy in reply to Bailybiscuit]

Thank you for your reply. I am grateful to you for giving me hope that there maybe a diagnosis somewhere along the line. My Rhumatologist has touted the idea of putting me on Methotrexate so if she does maybe that will help. All I know is that for the past 2 years I have had typical PMR symptoms shoulder and hip pain. Usually fairly well controlled, although not pain free, by the pred. This year I have had a whole lot of these new symptoms which I can't make any sense of.

[Bailybiscuit in reply to ValleysBoy]

Even though I was told I was A typical and it must be something else, now I am being told I probably still have pmr but Sjogren's as well. I take all those drugs but I still get various pains, maybe not as bad. I hope you are successful with your rheumatologist.

[ValleysBoy in reply to Bailybiscuit]

Thank you. I will let you know how I get on.Thanks

Steve

[Bailybiscuit in reply to ValleysBoy]

Yes do. I will be interested to hear.

[PMRpro Ambassador in reply to ValleysBoy]

It isn't uncommon for (for example) LORA (late onset RA) to present identically to PMR but later to apparently morph into more obvious RA. But there are other forms of inflammatory arthritis that do the same. There are other causes of the PMR symptoms - and, unfortunately, having PMR doesn't preclude you developing something else.

[cycli in reply to PMRpro]

Thanks for this info. PMR pro....Nothing surprises me now. Whatever this is its ways of affecting our body's ability to self regulate is astounding. I have only had these two ugly sisters diagnosed since June but I truly believe I have been struggling with their impact for several years and only barely coping. They finally got me in June and I have been at war and peace ever since. I have listened to knowledgeable people on here and the one common factor is the lack of understanding of our felt condition by the "so called experts" whether rheumatologist, endocrinologist or doctors of all descriptions. I feel empowered to advocate for myself (mind you, since I was 6years old that's always been true) as I know what I am feeling at any moment in relation to drugs and symptoms. They don't and can't. I sense how I feel and react. I am not prepared to be fobbed off with platitudes and lazy specialists who think they know better than me how I feel. I have this life and only this. I want to do more and want their cooperation to get as well as I can. What that is depends on any number of unknowns, but one thing is certain. If what they or anyone tells me to do does not make sense to what I feel ought to be happening I won't be listening. Contributors here may not prescribe but there is much sense here and it has import.

[ValleysBoy in reply to PMRpro]

Thanks PMR Pro. Doing more research on the Health Unlocked site I can see several other conditions that can cause these symptoms. But nothing is unfortunately clear.Today despite doubling my amatryptaline dose last night I woke to really really painful hands both to touch and to move. The back hip and groin pain is still there but more dulled than yesterday.

I have difficulty in standing up all the time.

By mid afternoon I decided to double the pred to see if that would help. Up to 20mg. I must admit as the evening has progressed I must admit I have started to feel a lot better but the pains are still there but dulled.

My mother had RA since the age of 12. My sisters 2 daughters have developed RA and Lupus. So there are immune problems in my family.

I wondered if I have been very lucky and avoided RA up until now and that it has suddenly caught up with me.

However the Rheumatologist did not seem to think my symptoms.

and blood tests pointed to that.

If this is RA or PMR I just want to be able to function basically. To be able to stand up and walk about without being in too much pain.

After diagnosis 2 years ago the pred was like a miracle and all the pain just left.

However over the past 2 years the pains have come back and despite altering the pred dosage up and down I have found it difficult to contain the pain.

This year with the eye problems and these other symptoms I once again feel I am disabled.

I will try the 20mg of pred plus the amatryptaline for the next few days to see if that makes things any better.

As always thanks for your help and advice. It is most appreciated

Thanks

Steve

[PMRpro Ambassador in reply to ValleysBoy]

"If this is RA or PMR I just want to be able to function basically. To be able to stand up and walk about without being in too much pain."

Which I think is perfectly reasonable - and I am very lucky in having access to 4 or 5 doctors whose view is much the same. I saw the guy in charge of the rehab department yesterday to get some physio. He didn't even twitch at the dose I told him I have needed recently to be able to function well - and has gone out of his way to make sure I get the physio I need to reduce the oral pred in the absence of our local pain clinic which is still "off" because of Covid. Neither of us can work out why - there is no-one in Covid ICU requiring the attention of the anaesthetists.

[ValleysBoy in reply to PMRpro]

Thank PMR Pro. Due to circumstances connected with a planned cruise last year I have a 3 month stock pile of pred so could pretty well take whatever dose I felt like. But in the past doses of 20mg have not made the pain go away although it has been bearable and I had gradually reduced back to 10mg. However these new symptoms were totally different than what had gone before so did not know what to do. GPS just gave me the Amatryptaline and Z-Pain. I phoned the Rheumatologist nurse support line about 20 times and left messages but got no replies only a voicemail message saying ring back but still no contact. That's why I asked on the list.I do not know if this is some kind of flare or something completely different.

However I woke today feeling much better. The combination of 20mg of pred and 20mg of Amatryptaline seems to be having an effect for which I am most grateful.

Thanks

Steve

s

[Bailybiscuit]

You could be called as Seri negative, I was, then Inflammatory arthritis, which I think covers several types. I tested negative for RA, yet I get called by my GP surgery for my annual review of my RA, which I always tell them I don't have but is never changed, it is just classed as RA.