[satelliteParticipant]

Hi everyone
Can’t sleep through worry, so have been reading the forum.
I’m currently awaiting an ‘urgent’ appointment with Haematology in my local hospital – appointment is 21 April, so having to wait till then is awful.
It all started when I had a flare up of my Rheumatoid arthritis back in October, my ESR bloods were 124, which is very highly elevated. Of course we thought it was my RA, but after my meds were put up to 20mg and a steroid injection, I felt much better. But my Consultant decided to keep monitoring my ESR which is still in the 100’s.
She referred me a few weeks ago after testing me for every autoimmune disease under the sun, all came back negative. So she is happy the bloods aren’t to do with my RA.
She sent me for a nuclear bone scan before Christmas due to pain in my right hip, it showed an uptake there.
Of course, after using old Dr Google I find myself here, as all the symptoms fit. I am fatigued, but it comes and goes, much like the pain in my hip and ache in my upper leg.
Anyway, I feel better just voicing my fears, and I’m so sorry for even here who has Myeloma, it’s something I’d never heard of before.
Am also awaiting an MRI, but due to covid, there’s a long waiting list.
Take care everyone 😔

[tw744Participant]

Hi Satellite, I’m one of the Peer Volunteers for Myeloma UK and a myeloma patient.
I’m really sorry to hear how delayed your investigations are and the stress this is causing you. I can remember when I was going through the process and how difficult a time it was even with shorter waiting times.
Of course it’s entirely possible that your eventual diagnosis may turn out to be unrelated to myeloma, but if it is we’re here to support you and there is a wealth of good information here on the Myeloma UK website. I’m sure you’re already aware that some Google search results go back a long way and may no longer be relevant or accurate.
I presume that your GP is aware of your referral? They should certainly recognise how hard this is for you and may be able to offer some relief from the anxiety and sleep issues it is causing.
Please do update us as to how you’re getting on.

[satelliteParticipant]

Thank you for your reply. It’s a worry, but there’s not much I can do until I have my appointment I suppose. It’s easy to ignore it when I’m at work, but at night it’s playing on my mind.
Hopefully it’s nothing serious, but just the referral alone scares me.
Take care everyone on here, I’ll keep you posted on what happens.

[richfsModerator]

Hi Satellite,

Sorry to hear of your concerns, it’s horrible waiting for appointments and test results, our minds do run away with themselves.

Myeloma UK have just trained some peer-volunteers to assist on this forum. Like tw744, I am one such person and was treated for myeloma in 2019.

Whilst myeloma is difficult to diagnose, the blood tests would generally show a raised protein level (mine is currently around 80g/l above a baseline of 60g/l) and a low white cell count. This varies a lot and there are different types of myeloma, but the protein and white cell levels are key. They can do a separate protein split blood test to show if you have a high level of one type of immunoglobulin, e.g. IgG. If they suspect myeloma, your GP would normally want to put you on a ‘2 week wait’ list with haematology, but the NHS is under extra stress following the last couple of years.

If you have these figures from your blood tests, I’d press your GP to get you a swifter appointment.

Following diagnosis, and whilst struggling with pain and fatigue, I found mindfulness very helpful and subscribed to the ‘Headspace’ App on my phone, it was well worth the £10 per month. Also listening to some quiet music on a good speaker (not the stressful tinniness of a phone) at night can help you focus on something and relax. I find Dire Straits to be the best!

Hopefully you’ll find a simpler cause of your current symptoms, but do keep pushing your GP and the consultant that you see to find the actual cause, don’t be fobbed of and do make sure you ask specific questions.

Well done for posting in the forum, we’re here for you and wish you well.

Let us know how you get on.

Rich 👍

[satelliteParticipant]

Hello
Thank you for your kind thoughts and information.
It was my Rheumatologist who first noticed the increase in my ESR. She’s been monitoring it since last October when I last had my RA flare. She’s looked for maybe Lupus, PMR and all sorts of other autoimmune conditions. She checked my immunoglobulins and also serum electrophoresis which was apparently normal at the time (December). But despite my RA being fine with an increase of Methotrexate 🤞 my ESR has gone up again to 124. I have to say I’ve had very good care from my Rheumatologist, she is very vigilant, otherwise the increase in ESR might have gone unnoticed.
So I’ll wait now until 21 April when I’m seeing Haematology.
Thank you once again for all your information on here and I’ll keep you posted.
Best wishes to all on this forum.

• This reply was modified 2 years, 9 months ago by  satellite.

[tony642Moderator]

Hi Satelite, I am also one of the forum volunteers. Myeloma is not a well known condition so I am not surprised that yo have not heard of it before. I am sure that it has already been said, but a lot of blood conditions are very similar to each other, and of course consulting with the internet can sometimes scare the life out of you!

The only way that I had my Myeloma confirmed was to have a bone marrow biopsy taken from my hip. I know its easy to say, but please don`t worry unnecessarilly about what it might be, wait until it is confirmed and then you can get a plan of action as to what they think is best.

Even if it is Myeloma, there are plenty of us that have been around with it for quite a few years, and there are lots of different treatments available to help you with it. It is not automatically doom and gloom. Keep your chin up, and stay positive.

Regards, Tony

[kh0305Moderator]

Hi Satellite,
Another forum volunteer here! My dad has myeloma and I can understand why you have come across myeloma as a possible cause of the issues as my dad is currently going through his first relapse and the first symptom that the MM was kicking off again was a pain in his hip (although the first time round it was rib pain).
Hopefully the results from the 21/4 will give you some definitive answers as to what is causing the pain and keeping fingers crossed it isn’t anything serious, though as Tony has said, there are many people living near normal lives with MM and certainly before the relapse, dad had 7 very normal years in remission.

Have you tried meditation before bed to try and help switch off so you can sleep? I know it is hard to turn off the mind but it may help. The headspace app that Rich mentioned is good or the aura apple app offers a free trial so may be worth a try to get through the next few weeks.
Try not to worry (easier said than done, I know!) and keep us posted on how you’re getting on x

[satelliteParticipant]

Thank you, I’m trying not to worry. Being at work helps, I can kind of switch off.
👍

[satelliteParticipant]

Thank you, I’ll check out the Headspace App.
Thank you all for your kind thoughts

[kh0305Moderator]

Hi Satellite,
Hope you are managing to get more sleep and that you are feeling better. Not too much longer until we are into April and then hopefully you will have some answers. We are all thinking of you x

[satelliteParticipant]

Hello, thank you, everyone on this forum is so kind.
Unfortunately my appointment has now been put back until 5 May, I was upset, but seems like the hospital is snowed under. My Rheumatologist asked for an MRI of my hip first week in January, I’m still waiting sadly.
Kind regards to everyone on here.

• This reply was modified 2 years, 9 months ago by  satellite.

[richfsModerator]

Hi Satellite,

How are you doing? It’s horrible having to wait for appointments. Hopefully you’ve enjoyed the good weather, I find sunny days much easier to get through than dark ones. Have you found anything to help you sleep at night, or tried any mindfulness techniques? They largely focus on controlling your breathing and being present in the room where you are, helping to stop your mind racing to other places. I’ve found them helpful – the hospital gave me 6 sessions with a counsellor (part funded by Macmillan) which improved my awareness of such techniques.

Best wishes, and do let us know how you’re getting on.

Rich 👍

[satelliteParticipant]

Hi
Thanks for keeping in touch.
I have my MRI with contrast tomorrow for my hip (hospital are apparently outsourcing all their outpatients to private facilities, as they are so snowed under), it’s quite painful at the moment, and aches at night, so hopefully I’ll know what’s happening there soon. Haematology 5/5, so still a bit of a wait, but we’ll see.
I’m sleeping quite well at the moment thanks, I’m very fatigued and tired, but trying not to worry unduly.
👍
That’s great MacMillan sorted Counselling for you, we do a lot of fundraising for them at work, such an amazing charity.
Sian

• This reply was modified 2 years, 9 months ago by  satellite.
• This reply was modified 2 years, 9 months ago by  satellite.

[kh0305Moderator]

Hi Sian,
Whilst it is a shame the appointment has been put back I’m pleased to hear you are getting your MRI today as that will hopefully give some clarity as to what is going on there. I hope it all goes well and the wait until May passes as quickly as it can. Take care and let us know how you get on with the MRI results x

[tony642Moderator]

Hi Satelite,

I am so sorry to hear that your appointment to find out what is happening has been put back. I know how difficult it is to wait, and what sorts of things can go through your mind. But lets hope they can get you sorted out as to what it is as soon as possible. Even if it is news you do not want to hear, remember that there are lots of different treatments available (with new ones coming on line fairly regularly), and lots of us managing to live normal lives whilst living with the disease.

I know it is difficult, but try to keep your chin up and stay positive, and remember we are always here and want to give you moral support when you need it.

Let us know what happens. regards, Tony

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