Bad Times - A Cathartic Post

I'm usually very positive. I get upset and have a rant and moan sure, we are all human after all, but i'm largely a positive person.

I forced myself out of bed to go for my usual morning swim. About half way through, I had to stop to rest my wrists as my joints hurt so much moving my hands through the water. My ankles are equally as bad, so instead of just swimming, I had to keep stopping to massage various joints, wincing in pain, having to focus on breathing exercises to try and get the pain under control enough to carry on.

Fibromyalgia does not primarily present in joints.

I believe I have received a wrongful diagnosis because my patient notes read "Patient has widespread pain" and I think that it is on the basis of this single statement alone, that I have received the Fibro diagnosis. I can't think of any other reason why they would attribute my symptoms to Fibro rather than RA.

These notes however are actually wrong, as I saw the Dr and told him I had widespread pain in all of my JOINTS. I was told by the MCAT diagnostic specialist that my GP is notorious for making very brief notes, which is why I believe this error has occurred.

With Fibro on my medical record, I feel like i'm now fighting a battle for them to address the real joint pain issues which have now spread to all of my joints after starting in just my wrists and hips.

Whatever happens, i now face 3 more months of pain and uncertainty and some days, dark days like this, I can't see the light at the end of the tunnel. The pain was so intense as I was getting changed I had to keep sobbing into my towel and it took me ages to get ready as my fingers are so sore, stiff and refuse to work properly.

I hope you are having a better day than me and will have a largely restful and pain free weekend xxx

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  • Hi ShellyWelly,

    sorry you seem to be having such a bad time of things at the moment. If you believe that you have been wrongly diagnosed you can always ask for a second opinion. I have put a link to the section on the NHS website where you can find out about this:

    nhs.uk/chq/Pages/910.aspx?C...

    In the meantime, your GP may be able to help with medication to help with the pain or suggest non medicinal alternatives such as massage or TENS. I do hope that you manage to get the help and support that you need. As we have mentioned before, please feel free to ring the helpline and talk to us:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    Best Wishes

    Beverley (NRAS Helpline)

  • Thanks Beverley, I am just concerned that they've come to the Fibro conclusion on very little evidence. Second opinion is definitely something I want.

    I've also found that some specialists have areas of expertise relating to early onset so i've found a special NHS clinin in my area and i'm going to ring my GP today to see if I can be referred there instead.

    I recently bought a TENS machine, but find it more useful for muscle pain and not useful for my joint pain, plus the pads are just too large to fit in individual fingers, but thank you for the suggestion.

    xx

  • Hi ShellyWelly,

    so sorry you are having it bad, i do feel your pain as when i was told i had RD they could not give me anything for it as i was having tests done to see what was up with my chest , 10 months later i had an op on my chest to remove my Thymus! the thymus is the heart & sole of the immune system, it was only at that time i could be put on meds for RD, and waiting all that time has not helped me as i now have degenerative joints in my right foot and my right hand.

    Please do all you can to get second opinion, as the longer you are with out the right meds is not going to be good in the long run, ask your GP, i did this to find out what was up with my chest as the Dr i was seeing at the time did not want to anything about it, so i asked my GP if there was anything she could do as i was not happy with the chest Dr, and she said yes i can get you what they call a pick and choose, she gave me a list of hospitals to pick from, i ended up seeing top cancer surgeon at Guys in London.

    marcus6 xx

  • Thanks Marcus6, awful to hear that you were left untreated for so long which ended up causing long term degeneration :(

    That's the thing that is scaring me so much. Everything I read says that early diagnosis and treatment is critical and it's already been 7 months, by the time I see someone again, it will be 10 months. I've pretty much had to write this entire year of my life off, which is a difficult thing to have to deal with, quite aside from all the pain.

    For me, I hope it doesn't turn out to be RA, but on the back of all the research i've done, I can't find anything else that comes close to being a symptom match, only RA.

    I'll be spending my lunch break on the phone again today x

  • Just try to hang in there girl! I'm sure that you will get that second opinion, and the proper treatment soon. Meantime, you've got supportive gps, which is vital. Spell it out to them constantly, so that they fully grasp that the problem is your joints.

    I had one consultation when I was told that a lot of my pain was down to fibromyalgia. I refused to accept that, and just carried on, making lots of noise, until I was heard, and my feeling that my RD was not under control was accepted.

    So battle on, and don't lose heart! M x

  • Despite having very swollen joints it took me well over a year to get diagnosed. I felt very alone at the time but since participating on forums have realised that this is not an uncommon experience at all. I understand you're waiting for blood tests results, if there's anything you can do to hurry that up, they may well help clarify the situation.

    I think what strikes me is that fibromyalgia, if that is what you have, is not an easy number by a long chalk. And yet you don't seem to have had a very good or forward-looking consultation even based on that diagnosis.

    I hear what you say about having joint pain but keep an open mind for now, infuriating and frustrating as 'not knowing' can be. There are various kinds of inflammatory arthritis and presumably other conditions too that might turn out to be the culprit. You need to document your symptoms very objectively and prepare an account that is both succinct and thorough ready for the next specialist you see - and that's not easy.

    The clinic you've identified does sound like a really good find, I hope you get referred there ASAP. Meanwhile, hang on in there, you will get a secure diagnosis eventually, and you will get appropriate treatment because you seem like a very determined person.

    Meanwhile, lean on all of us and rant or question or whatever you need to do to get through.

  • Thank you. I wasn't even asked about my symptoms though at this appointment. I honestly felt like he didn't want to know and just wanted to me leave.

    I am doing my best to stay open minded and my symptoms diary is a list of bullet points of where pain is, kind of pain and severity so i've made it as brief as possible, but i'm no longer keeping it as it seems pointless if no one has the inclination to even look at it.

    I've since heard that the clinic I have found also run a triage system and that despite having already been through triage (which took 3 months, then a further 2 months to see the last Rheumy), that I will have to start at the bottom of the pile again, and go through triage again meaning I am unlikely to see a Rheumy this side of the year.

    To say i'm depressed is an understatement. I'm trying really hard to keep it together but I hate my life currently, being able to do nothing but sit in front of the tv (my wrists hurt too much most of the time to hold a book) is my idea of hell and i'm really struggling.

    I'm raising a complaint via PALS as the consultant didn't do half of the things he should have done to objectively determine what's wrong with me.

    Thanks xx

  • Hi ShellyWelly. I almost felt bad putting up a happy post when things are so lousy at your end just now but my appointment today went very well so I wanted to update my friends here. It did take 9 months for me to get a formal diagnosis and treatment and what I wanted to say was that I don't have erosions yet, although I do have a bit of early OA degeneration apparently. And my GP tried me on a DMARD (first allergic drug reaction), a steriod injection in the bum and a course of Prednisolone while I waited so my rheumy pointed out today that this might have stalled the erosive process down. Like you I really struggled for those 9 months though - got stuck in the bath once and couldn't drive or chop up food, write or work because of wrists and knuckles and had to go down stairs on my backside because of knee pain.

    You haven't said whether the steroids have helped at all with the pain so far but I'm guessing from your swim experience that the answer is no? There are other types of arthritis as I'm sure you know and also there's Palindromic Rheumatism that sometimes turns into RA and sometimes fizzles out or never actaully becomes erosive although it's supposed to be terribly painful in the joints. What I'm trying to say is please try not to panic that the disease might be causing degeneration because it may well not be. The steroids should slow it down if it is and your swimming etc should help keep your muscles strong which in turn will support your joints to an extent.

    However I fully agree with Marcus and Hatshepsut that you must keep fighting your corner and not lose heart. A friend with PsA told me recently that her Canadian rheumy told her that in his view almost every diagnosis of primary Fibro turns out to be some type of inflammatory arthritis in the end. Psoriatic Arthritis in particular often takes ages to diagnose because of sero negative blood results.

    Hope you are feeling a bit better tonight? Twitchy x

  • Hey Twitchy

    Don't feel bad hunny, it's nice to know that some of us are getting somewhere and it made me happy to read your post earlier.

    The steroids didn't help no, i've finished them now, I think the swelling has gone down though. It;s interesting hearing your early experience in those first 9 months. On days when i'm not in constant high levels of pain I feel like i'm a fraud and shouldn't be moaning, but the pain never goes away, just some hours/days it's better and more bearable. Due to him saying that my swelling is all soft tissue swelling around my joints and not my actual joints, then yes, it could be some other form of arthritis, but how do I find that out??

    Thanks for calming my worries about the possible long term damage. It's nice to think that that might not and probably isn't the case with the lack of joint swelling, so that's something at least :)

    I wish I was feeling better but this has been the most draining week i've had in recent memory, i'm utterly exhausted and feeling very down. I'm sure it will pass but i'm really fighting to stop depression descending on me.

    I hope you have a nice evening and a lovely weekend xx

  • I hope that things improve for you too of course. I've had some very severe patches of depression since my RA started and I see a counselor now for CBT (tried and antidepressant and of course couldn't tolerate it!) and this really helps me a lot. I also took my health into my own hands and got myself privately checked for mineral and vitamin deficiences that the GP refused to look into. I am Hypothyroid so I learned more about this autoimmune condition too and found out that I had vitamin D deficiency and also a low end of normal range in B12. I found out that B12 is terribly important for the nervous system and the ranges are thought to be far too conservative in the UK and that you can't OD on B12 so I take a tablet a day sublingually now. I feel this and a really good diet and as much exercise as I can do does help. If you're not able to exercise as much as you were then this will contribute to the low feeling so even tai chi and gentle yoga do really help I've found.

    I showed the GP the private lab results for my vitamin D and he (rather defensively!) agreed I was deficient and then told me my calcium was low too! So he prescribed AdCal D3 and I have to say that within a few weeks of starting this my mood had lifted tremendously. While you wait for a diagnosis it might be worth getting these things checked out and learning all you can about the immune system too? I have found this has helped me a lot because I'm the sort who needs to steep myself in what is going on in my life and understand it as fully as possible. This can be a good thing but has it's down sides too!

    I have also stopped taking lists in to see my rheumy just as Petalnumber2 has because I worked out that he didn't like it either. However he was really pleased once when I typed up bullet points of how my month on Prednisolone had gone and some pictures of the rashes on my face that I thought might be Lupus, and swollen toe pads - he asked if he could keep it. So it's good to be well prepared and quite business-like with these consultants I have found. x

  • Hello Shellywelly,

    I'm sorry to hear how bad things have become for you. I agree with others that it is important to get some treatment as soon as possible for RA/RD and it is so frustrating waiting for a proper diagnosis.

    I read your previous blog about being treated badly by the doctor you had an appointment with recently, and it was very much like reading about an experience which I had several years ago. My appointment was with a gastroenterologist, and like you I had my little piece of paper with all my prompts written on it.

    With hindsight I think he had an aversion to my list and he was very rude in both manner and physically when he examined me.

    I did make a complaint through the proper channels and he had to apologise to me, plus his clinics were monitored for 6 months in case he misbehave himself with other patients. I think there are quite a few doctors who regularly upset patients with their rudeness, but the instances go unreported. I believe it is important to make a complaint.

    I really hope you can get an appointment with another Rheumatologist, and if possible take someone with you rather than take a piece of paper to rely on for prompts. May I also suggest that you don't push yourself so hard physically and rest as often as possible, even though you work full time I presume.

    One more point, swelling is obviously a visual sign of something going on in an area like a joint, fingers, knuckles, toes, ankles and wrists and elsewhere, But there is not always swelling to be seen when there is inflammation occurring in a joint. I don't get much swelling, but the pain and discomfort is enough to tell me that there is inflammation going on. It is often the CAPSULE inside the joint which is swollen and distended, as my GP explained to me.

    Anyway,I wish you well, take care of yourself. June x

  • Thank you Petal

    I made a decision this afternoon to make a formal complaint. I won't put up with being treated like that, and he didn't ask me anywhere near enough questions to enable him to make an objective diagnosis. I'm a very good communicator and am a real people person, I never have a problem with anyone so know it's not my attitude or anything I did that would warrant anyone treating me that way.

    My ankles are massively swollen and I have huge pockets of inflamation on my ankles, feet, wrists and elbows. My fingers are swollen, but not my actual knuckle joints. He commented that my hands were fine as he could see my knuckles. He didn't ask if my fingers were stiff, or ask me to demonstrate any flexion or movement, even though I told him the joint swelling had gone down after 4 months on Naproxen.

    I take your point about not pushing too hard, but I feel like a fraud. If there is nothing wrong with me, as he is saying there isn't then I should just get on with it. I'm pushing myself to the point that I shake and feel sick and several times I day a wave of exhaustion washes over me to the point that i'm sure i'm going to pass out. The holiday of a lifetime booked for April for my daughters 21st and my 40th means In the next couple of months I would start upping my exercise and start snowboarding again. I know i'm too poorly to do it, but part of me wants to do it so I end up in hospital to force someone to to do something.

    I know that's silly, but i'm in such a bad place right now that i'm thinking very silly things out of frustration.

    Thank you for your message, all the little bits of information that you and others are telling me about their own experiences and symptoms is very helpful to me.

    Have a lovely weekend xxx

  • Oh please don't push yourself to the point of exhaustion absolutely.

    I had about 10 years of frustration through not being understood or being properly diagnosed, so I really understand the way you are thinking. What you are doing is punishing yourself out of sheer frustration.

    I had urticaria (not even in the English dictionary) and every time my skin erupted, so my tummy swelled and was very painful. But, no doctor or consultant

    could find anything wrong. Urticaria/angeodema is still not understood fully. Eventually, I insisted on being referred to an Immunologist. He sorted me out and got my condition under control.

    Diagnosis of RA/RD is not an exact science unfortunately, and my youngest brother is going through the same difficulties as you at the moment.

    Attitudes and treatments differ from one area to another,indeed from country to country.

    So, I would encourage you to do some homework on Rheumatologists, and ask to be referred. It worked for me and it could certainly work for you. In fact the best place to start could well be by making that call to NRAS.

    Good luck to you Shelly, and keep us informed of progress. June xx

  • Thanks June. I've spoken to the lovely people at NRAS x

  • Shellywelly, I think you are right to complain about your ghastly consultant because you have been treated so badly, but I also hope that you can get seen quickly by a new rheumatologist and I hope your GP can speed things up for you.

    Meanwhile because your body is in distress, you must rest and I am afraid give into this terrible pain just for a while. Is it possible to take a bit of time off work?

    You have enjoyed such an active life before the onset of this horrible pain. Take a step back, just for a while because trying to stay so active and your body being under attack is a massive stress! When you go swimming, it might be a good idea to spend time doing a warm up in water first, gently bending knees, wrists feet etc before launching yourself on that big swim !! Be kind to yourself Shelly, you have been treated so badly by your consultant, shame on him.

    Have you tried compression gloves for your hands, you can get them from Boots orvAmazon. I find them fantastic, help me a lot.

    I see Beverley, NRAS has sent you message, have you been in touch with her re. Finding another consultant, she is bound to have feedback from other members. You cannot be expected to wait till next year until you get to see new Rheumy after going thru triage etc.

    Stay determined, you will get there, but should never have been put in this situation by that ghastly consultant.

    Lynda xx

  • What a lovely reply jockey,

    It isn't easy to give the right support at times, especially when we don't know the person very well, who is suffering badly. But, if I found your words calming and reassuring I'm sure Shelly will too. Xx

  • Sorry, I got your name wrong jockey.

  • I give up, my tablet has the last word, it seems !!

  • Petal, you're very kind to me, thankyou for the lovely comments. I think there are some wonderful people on this site and I have learnt so much from them, and I hope to have passed on helpful hints to others through it also. RA and it's associated problems is such a horrible disease and it amazes me that non sufferers know so little about it, and how much we have to cope with. So our group on here can help each other in a cyber way!! I'm going thru a bit of a time as well at the moment and just changing consultants so I fully understand what poor Shelly's going through. There's one thing for certain, we need first class Rheumatologists with our disease, they are our lifeline, and some kindness and empathy from them is much appreciated, not rudeness and lack of understanding of our problems.

    By the way Petal, my Jockety name I have taken from my daughters west highland terrier, his name is Jock, he's such a babe!!

    Take care, Lynda xx

  • I second Petal's reply & empathise with you Lynda as I'm considering also changing Rheumys for, I would guess, similar reasons.

    I do hope you find one you are able to build a good professional realtionship with, I know it can make all the difference with this damned disease & associated problems. x

  • Hi nomoreheels, seems there's more than a few of us having probs with difficult rheumatologists. The new rheumy I am seeing already sees my sister, aunt and my youngest daughter, he will have the whole blooming female part of my family soon to deal with. Just goes to show in my family anyway how those genes have been passed down from one generation to another, as yet no males been affected.

    If you are thinking of changing consultants then I would say don't delay. Firstly have a good investigation on line, check out which hospitals have rheumatology depts. Then, some of the hospitals publish patient reviews, have a read of them. If you are interested in a consultant, ring the hospital and ask to speak to his secretary. If you are charming to them and tell them the problems you are having they are usually charming back!! Then you can ask how long the current waiting list is. When you have all the info and facts, go along to your GP and tell him you want to change and where you want to go.

    My GP was delighted to help me, but then he is a very lovely Doctor!!

    This is a great group, I have had a lot of encouragement and help and advice from it, the helpline is also very helpful, thank goodness for NRAS !! Good luck in your search for new consultant. Take care, lynda xx

  • Thanks for that info Lynda but.....I did the searching thing & found the Rheumy I preferred but my appointment was cancelled an hour before my first appointment as he'd contracted a noro virus which of course treating patients with autoimmune problems was sensible to do. My problem was I had been 3 months without my meds by that time after returning to the UK & needed a Rheumy to represcribe them as my GP wasn't at all comfortable doing that without a thorough check up, again sensible, so I accepted the next available appointment with any Rheumy in desperation & I've remained on her list since. I'm reasonably sure that if I asked to be referred to my original choice it wouldn't be a problem but do need to get it right this time so am in the process of researching yet again to make sure I get it right.

    Thanks again though & pleased you're sorted & having the family connection all with the same Rheumy, though I wouldn't wish RD on anyone, must help.

    I agree & thank my blessings I found this site. I fortunately had no need for much help before though I had lurked for a while, more out of interest in how others dealt with the disease in my early days & when I tried to join for some reason it wouldn't accept my attempts. When I was diagnosed I was fortunate from the get go & had total confidence in my Consultants in Spain, 3 in all but each equally good as it was University Hospital with more frequent turnaround than the norm. I do feel now though I have need for that "reach out" type of feeling now (not the best expression but the one I want is eluding me at the mo) as I don't have the same confidence or feeling of being well cared for treatment wise & this site really helps with that.

    Thanks again & hope you're as ok as poss this evening. x

  • Thanks for being so lovely and understanding Lynda. I should slow down but don't feel like I should if there's nothing wrong with me. As soon as I get a diagnosis then I'll feel like I have an excuse to take time off but I feel like I can't justify it you know?

    Pain hasn't been too bad over the last couple of days, so it's given me a bit of relief.

    I have spoken to nras who were indeed brilliant :)

    Sorry for being such a negative grump bum the last few days xx

  • Aw, Shelly, so glad you been feeling bit better - that's great news!! You certainly not a grump bum!! You've had an awful lot to deal with, and I'm sure most of us on this site know exactly where you're coming from !! If you want to gripe, moan, curse, scream or anything, let it out girl !!! Just remember, be kind to yourself, you got a lot to deal with,

    Lynda xx

  • You aren't a fraud - please don't think that ever! and there's no shame in being depressed - you are in a lot of pain and anyway depression is listed as a symptom of autoimmune diseases including RA. You wouldn't be in this much pain if you were well - and even if it turns out to be all due to Fibro this is a very painful condition that many on here suffer along with RA. So glad you are complaining about this awful man too! Hope you get a good night's sleep. x

  • Hope you're feeling better this morning, and that you managed to have a good night's sleep. Before you complain, get a copy of the letter he will send to your gp.That's what I did, and it means it's easier to challenge any assumptions he has made, Sometimes it's difficult to believe that you've been in the same room!

    Good luck, keep us posted. M x

    ps It's also a good idea to write down everything that you can remember was said and done asap, so that you have it to refer to. Mx

  • I'm waiting for my latest test results then paying to receive a copy of all my medical records as the symptoms I'm telling people about just don't seem to be recorded properly or at all.

    I just keep replaying it in my head, cross for not asking him more questions and challenging him.

  • I shall not go into all my experiences because this is about you.

    I write this post with positive suggestions that may help.

    Recently I started back at my local gym. For no extra cost I have a member of staff who will spend an hour with me each week. She has taught me not to exercise and swim both on same day. Not to swim at all, just float to relax and take stress out of wrists, knees etc. just walk up and down in pool as water resistance is great to keep up muscle but no stress to cause any damage on joints. She has taught me to enjoy what I can do not what I can't. She has advised that if my wrists are hurting one day, rest them and do exercises for my legs knees instead and visa versa. She has shown me how to do exercises without using my wrists or knees but how I can still build up leg, calf, hamstring arm and shoulder muscles without the pain.

    I figured what did she know, so swam, just to prove to myself right and her wrong........Nuff said.

    Dare I suggest that you don't hit the self destruct button. Look at the long term damage you may be doing now without intending do. Taking time out is not about accepting defeat, you will not be giving in it is a very positive way forward. A rest will help see things with better clarity which in turn will help yourself too. Reading back on some of your replies there is the same theme running through them from their experiences advising you to be kind to yourself and rest.

    Can I recommend you write your letter of complaints by email, send it to yourself not him, then write another and another and send to yourself, keep writing untill you get some of it out of your system. Make sure you get some sleep and rest don't write a letter in the middle of night and post to anybody except yourself. What you write when you are sleep deprived or deep pain will not necessarily be constructive and you may regret it. When you feel confident you have written a constructive letter with your achievable objectives get somebody you trust to check it before you post and naturally keep a copy.

    I am confident that you will soon be in a better place of mind. Everybody copes in different ways you will find yours

  • Thanks for your advice. I think hitting self destruct is a response to the frustration, I blame myself and internalise things, though I no I shouldnt! I was going to rest this weekend, but due to pain levels being thanfully lower, i've felt more able and so have spent all weekend cleaning and tiyding and decorating, oh and putting up furniture, not to mention visists to the tip. Am shattered....shame its now Sunday evening! BUT, i'm feeling brighter and most positive again.

    I totally agree with your advice about the complaint letter, I know it's easy to let emotion get in the way of what you are trying to get across, I prefer to be as factual as possible, but I have also commented don how emotionally distressing I found the consultation.

    I've come to terms with the fact i've got several more months to go before anything else happens now and there is nothing I can do about that, and being angry and upset won't help or change things, so i'm going to focus on things that are within my power and that is researching any possible alternatives and going back to my GP to find out on what grounds the Fibro diagnosis was made. I'll also get the paper work ready for my medical records access request.

    Thank you for your advice and reassurances.

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