Confusion over diagnosis

Hi following on from the post fibre myalgia or PMR I'm not sure which I have if either.  My rheumatologist changed my diagnosis from PMR to fibre in a letter following a visit. He did not discuss it with me so was pretty shocked.  He said as my bloods are normal and because I am only 46 I don't fit the profile.  I was on 15mg of pred and it has taken 6 difficult months to come of it. After about 2 weeks of being steriod free suddenly all the aches and pains came back!  I was on morphine patches 5mg and my doctor told me to just stick another patch on taking it to 10mg.  The consequences were not nice I was totally out of it!

I'm so upset with all of this.  I blew up immediately on pred so don't really want to go down that route again.  Is their an alternative non steriod based??

The steriods worked and I was no longer in pain so if that worked maybe the diagnosis should be PMR?

I'm waiting on a 2nd opinion I'm with benenden private healthcare so although I will see someone else more quickly I have no choice on who that will be.

40 Replies

  • Sorry, no non-steroid treatment for PMR.  And once again I'm appalled that doctors think it's okay to take a patient off a medication that is working for them and then have them use morphine instead.  The expert contributors will have a lot to say about this one I'm sure, and advice about how to handle dealing with the medics. 

    If you go back on steroids, there are strategies to help deal with the weight-gaining side effects.  One which has helped a lot of us is to virtually eliminate simple carbs from the diet (bread, sweets including soda pop, that sort of thing) as well as most fried foods, and eat a lot of vegetables and fruits.

    Hope things are sorted for you soon!

  • Thank you for replying.  I definitely need help dealing with the medics!!  My husband is coming with me to my app at the end of the month.  He is very dismissive and has completely messed my body up.  I was better off before this all started!!

    I tried to be careful when on steriods but I bloated in a serious way.  Even if I keep the weight off it doesn't stop the bloating.  That on its own is depressing.  I'm still young and how I look is important to me

  • I hear you!  And age has nothing to do with wanting to look good. 😘  We all want to look our best.  There may be others who've dealt with the same problem who can offer advice.  I think I even read in my early days on one of these forums that eating a lot of celery can help if it is fluid retention causing the problem!  So who knows, keep asking, and an answer will eventually be forthcoming.  💕

  • Thanks 

  • Hi Nicky, as Heron has said, if it is PMR then there is no other option than Pred - sorry!

    And as for your Rheumy, you may not fit HIS profile - but as many will confirm, you are not too young to get PMR, and as for your bloods, many patients also have no raised markers!

    Again as Heron has said, cutting carbs and generally being sensible about diet can help, as well as certain foods that help the bloating - I'm sure if Celtic reads this she will come along with good advice on that one. Think melon and asparagus come into it, but not sure.

    Good idea to take along someone to your next appointment, it always helps to have 2 sets of ears, and prepare yourself with questions.

    Looking good is important to all of us, but getting better is just as important.

    Good luck.

  • Thanks x

  • Did the pred you were on deal with the pain? If it did then it is NOT fibromyalgia since that does NOT respond to pred. You may struggle to find a rheumy who will accept you can have PMR under 50 - but a rheumy specialist nurse told someone on this forum a few weeks ago that they are seeing far more younger patients with PMR. 

    As an aside, has your vit D been checked? A few people recently have said the "fibromyalgia" they were told they had disappeared when their vit D was got back to where it should be. It is easy to check and cheap enough to rectify so always worth a try. Even if only a bit of the pain is relieved it is a help. 

    On another forum today there is a post from someone who has benefited greatly from Bowen therapy, together with support from a few others who have also found it made a big difference. It won't help the PMR itself - but it may well help reduce some of the pain from (in particular) myofascial pain syndrome and/or piriformis syndrome. Both are commonly found alongside PMR. 

    As they keep saying: Every little helps.

  • Thank you I will look at those x

  • Sorry yes it make a difference but became less effective as I dropped.  

  • Nicky, it sounds as though you need that second opinion and let's hope it's more successful than the first one, someone  who realises that you don't have to meet a certain profile with abnormal bloods nor be a certain age - you certainly wouldn't be the first person to be diagnosed with PMR at the age of 46   The very fact that all the pains have returned after coming off steroids very much proves the original diagnosis of PMR.  Whether you have Fibromyalgia as well is another matter but quite possible and will need another medication to relieve those symptoms.

    With regard to the bloating, DL has already recommended melon and asparagus, and fennel, celery and garlic is also good - they are known diuretic foods so will help with steroid-induced fluid retention if you do go back on steroids.

    Lots of good luck wishes - hope Benenden comes up trumps with a well-advised rheumatologist. 

  • Thanks.  I take it using an actual diuretic is out of the question even if herbal?

  • It depends what other medication you might be taking.   Before considering any supplements whether on prescription or bought over-the-counter, however natural, they should be checked out with a good pharmacist in the first instance for any possible interaction with each other.

  • Nicky, I meant to also mention that if you haven't already had your hormone levels checked, it might be wise to do so as I have come across a few people in the past who have been found to have a hormone deficiency which, once corrected, resolved their pain.

  • I have had loads of blood tests I'm pretty sure hormones were one as the want to check me for the menopause.  

    Not know what is the correct diagnosis and treatment is so so depressing if I knew at least I could make a plan.  

  • Just did a little reading, and now I know that prednisone can cause electrolyte imbalance (through its tendency to drain the body of elements like calcium and potassium).  Guess this is why eating certain foods helps with fluid retention as they bring the electrolytes back into balance.  I was curious because celery is one of those foods and it's high in sodium.  But it also contains potassium, as does asparagus, for example.   

  • Thanks that's useful to know 

  • Hi Nicky1969

    The others have said some very useful things about managing with the weight gain and body shape changes. I have also been doing quite a lot of research into this as I wanted to find a plan that might suit me but also let me not beat myself up if I wasn't able to be really strict with myself. I couldn't find a single source of information so gathered quite a few different details together. So far I've managed to keep the weight gain on high dose steroids for GCA (60mg then 40mg) to 1-2kg (depending on the day), and I'm definitely no saint when it comes to food temptation. 

    In case this is of help, what I've pulled together is: 

    1. The weight gain and body shape changes on prednisolone are due to increased appetite that is difficult to resist, water retention and a redistribution of body fat into areas where we notice it (abdomen, back and base of the neck and face), and we know that others might notice it too. 

    2. Reading about fluid retention and prednisolone, I decided to reduce sodium in my diet and increase the potassium, and make sure I drank a bit more water throughout the day. I have noticed that when I have meals with more potassium the bloating is better the next day. This is my favourite source of information about high-potassium foods:

    3. Having frequent small meals has worked well for me. It makes the hunger cravings easier to manage and has let me work out the pattern of cravings in relation to the release of the drug into my system across the day. I've found that adjusting when I eat to my prednisolone-dictated schedule is much easier than feeling the steroids are controlling what I do. I wake up early and have some instant porridge with almond milk (skimmed milk is also good) at about 5am, go back to bed, then I have my medication around 8am with something light so I'm not having the tablets on an empty stomach. I get really hungry about 11.30am so that's when I have the first half of my lunch. I have the second part of my lunch at around 3pm, and a snack at about 5. By the evening the cravings are lessening a bit so my evening meal is almost at a normal time. Someone here recommended a tiny bit of a higher fat ingredient to help with the cravings and that certainly seems to work with me. I think it may trigger the satiety part of the brain that tells the stomach it doesn't need any more food. 

    4. I have switched from simple carbs (pasta, rice, white bread) to complex wholegrain carbs and reduced them overall. I've substituted lots more protein and vegetables. It's hard when you're feeling ill to cook a lot but I give myself a break and sometimes buy a few of the healthier ready meals to make sure I don't give in to my love of pasta too easily. Dietitians recommend lots of variety in terms of ingredients and flavours to keep people from becoming de-motivated, so I try that too when I'm feeling up to it. 

    5. This link might be helpful (ignore the references to chemotherapy - the prednisolone/steroid references are probably just as relevant to all its uses in terms of weight gain)

    6. Oh, and yes, I have treats. It's hard enough to have everything else going on and manage the mood changes that sometimes come with the pred. A square (or two) of dark chocolate or a couple of crisps now and then help me stay on track, oddly. 

  • Thank you so much that was really helpful

  • Cloudgazer

    That treat of "a square or two of dark chocolate" is actually a healthy treat! 70% dark chocolate contains flavonoids which are ant-inflammatory substances!  Enjoy!

  • CloudGazer6

    What a wonderful detailed reply you have given to Nicky1969 and so helpful to lots of us on the forum.  I've been making notes and following your links too ... Thank you

    All the very best to you Nicky1969 X and of course CloudGazer6

  • Thank you! Glad it's of help. I'll try to post it as a separate post if you think it could be useful more widely 

  • That would probably be a good idea. Then it would reach a wider audience - not everybody has time to go back through all the posts and replies that come in a day or so after initial question. 

  • I think everyone would appreciate you advice an experience so maybe a separate post would be good.  Thanks again for taking the time to reply

  • Thanks - I've put it under a separate post called 'Managing prednisolone weight gain and bloating - some ideas'. Celtic - yes, I cheated slightly as I know about the dark chocolate benefits, but also it's my favourite chocolate (not helped by British Gas sending me some free dark chocolates this morning in the post...). Definitely no saint...

  • Wow, how did you manage to get free choccies from BG?  Very jealous! 

  • I know! I never win anything like that. It was a special offer. One of the advantages of having pred insomnia - I must have clicked on the email to enter at some strange hour of the early morning.

    I'm going to put it on my GCA 'silver linings' list

  • Hi Nicky, just wanted to let you know that I'm a 45 yr old male who has recently been diagnosed with PMR. I've posted a few times o

    n here but if you had any questions about my experience so far just ask...

  • Hi,thanks for replying.  not having a definitive diagnosis is pretty depressing!  I struggle as I have two young children and I can no longer keep up with them.  

    How did your diagnosis come about?

  • "How did your diagnosis come about?"

    To put it bluntly - he has a particularly good rheumy who is able to think outside the box!

  • I don't suppose he is in the south east

  • Nicky, yes he is - in Chertsey, Surrey (Ashford & St Peter's Hospital).  Whereabouts in the south east are you?  He's well worth a journey!

  • I'm in Kent so not so far.  Could you give me his details please

  • Nicky, I've sent you a personal message with his contact details, including 'phone numbers for both his NHS and private secretaries.

  • Hi Nicky, sorry for the slow response, my diagnosis has pretty much come about by a matter of elimination. It's my legs that have primarily affected, with pain and stiffness in my quads and calves, hands and feet and as I'm 45 I'm regarded as an "atypical" case. I've had a battery of tests including an MRI, petscan, muscle biopsy, colonoscopy and numerous blood tests (with high inflammation markers ESR 90 / CRP 137). Rather than confirm PMR, the tests have eliminated other possible diseases. I did not respond "miraculously" to Prednisolone but it did seem to help alleviate some of the pain and inflammation. It's taken a good three months to get on top of the illness but I'm now pain free (but still have stiffness) and working to reduce my Pred dosage (I'm down to 15mg a day). My view (from my limited experience) is that if you do not show classic PMR symptoms then the diagnosis is always going to be difficult. My symptoms have been quite different to the classic presentation but my rheumy is still confident that I have PMR. I totally sympathise with the frustration of not knowing what's wrong with you. I was feeling exactly the same up to a few weeks ago. I think there are still a lot of unknown conditions out there that come under PMR because they fit that box best given the current knowledge.

    On another note regarding weight gain, I followed an auto immune diet (no dairy / refined sugar / gluten) for a month. Since I have been ill I've lost 2 stone (which has been down to the illness, not the diet). As I've started to feel better I've relaxed the diet a little. It's not for everybody but I feel it helped me and if I can do anything that may help alleviate the causes of inflammation as I reduce my Pred I'll give a go!

    I hope you start to feel better soon, I have a 6yr old and an 8yr old so I know how busy you are!!


  • Hi thanks for replying.  Lots of people have mentioned you so it was good to hear what you have to say.

    Like you I predominantly have the pain in the lower half of my body but at times I have flare ups in my shoulders and hands but nothing I can't deal with.  

    I am seeing the consultant that has been recommended next Monday so hopefully I can get a proper diagnosis and someone who doesn't dismiss me continuously.  

    Not sure if I mentioned it but my kids are the same age as yours.  We have had to employ an au pair as I just can't manage anymore.  I was rushing around so much and in so much pain that I would literally collapse after 4pm do was no good to anyone and that was after sleeping half the day!!  It has helped having the au pair as she can do so much more of the physical stuff which leaves me yo just spend quality time with the children  which is at the end of the day what they need and want.  

    Thanks for the info on the diet too.  If I am going back in the steriods then I need to counteract them from the start.  My body starting changing almost immediately so this time round (if it happens) then I need to be prepared 

    Thx again

  • You're welcome Nicky, I hope I've been of some help. Keep us informed on how you get on Monday!

  • You all have been immensely helpful.  Thank you xx

  • A second opinion seems like a really good idea. If you respond to prednisone seems like PMR is the culprit. My labs were only slightly elevated when I was diagnosed a year ago. Your doctor should also rule out other conditions such as rheumatoid arthritis, lupus, cancer etc. My primary physician did much of this, but also sent me to a rheumatologist and an oncologist/hematologist to analyze my blood work. I have had a chronically elevated white blood cell count for several years. I hope you get the answers you seek. Stay diligent and get a new doctor if you feel you're not getting good care. All my best to you!

  • Hi my doctor has run a lot of tests I know lupus was one and RA. I'm presuming cancer would have been included.  

    Thanks for your kind words

  • Great! Take care of yourself!

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