Totally frustrated!

General Support
1

I'm sorry to say this may be a long one!

I don't know where I am at the minute and feel so full of frustration and emotional turmoil that I need to vent.

Quick recap; been off work since Feb 27, widespread pain and crushing fatigue.

MRI of spine to determine if a biologic was clinically indicated (spinal marrow oedema seen in previous MRI)

Occupation Health to determine the way forward as to work/ hours etc.

So........

MRI shows no disease progression, which is good news, but means no biologic I presume.

Rheumatologist clinic letter from April appointment says "many of her musculoskeletal symptoms could well be chronic pain from secondary fibromyalgia". This was the first I'd heard of it because the impression he gave me during the appointment was that he had considered fibromyalgia but as I didn't have many of the classic tender points he had ruled it out (?) I have been told numerous times by doc dentist etc that I have a high pain threshold (and I guess I do after driving myself to A&E during a kidney stone attack and having both kids without pain relief.) Does this make a difference re tender points?

The only follow up appointment is for a nurse clinic in July to counsel over the use of biologics which of course will not be clinically indicated so NHS funding will not be granted, so the appointment seems redundant now.

I feel I've just been left hanging in the wind, no support. I've tried phoning the nurse line but have had no call back, same with the Docs secretary.

I'm really fed up! I would never leave a patient hanging like this, I feel I've just been left to get on with it!

Occupation Health Consultant can't really recommend much to help as he doesn't know the treatment plan........that's because I don't have one! or not one I'm privy to anyway!

He's suggested a further reduction in hours but as I will get NO assistance in any way shape or form from the state ( because I have an adult son who lives with me and works!) I'm resisting that at the moment or I may have to sell this old bod on street corners! (Joke......don't think I could give it away!! ;))

My partner wants me to move in with him so I don't have to do this all on my own, but I just can't. I want to move in when the time feels right not to be a burden and lean totally on him. Also his boys are 14 and 16, lovely lads but 1, I don't feel I can cope with two boisterous teenagers at the moment and 2, why would they want me feeling crappy all over the place. I wouldn't say we've had arguments over this but we certainly disagree about the best way forward. I find it hard to give up my independence, and want to get there as an equal partner.

Oh, and to cap it all off my smear test (pap) came back with abnormal cells and high risk HPVs so will have to have a date with Wall.E (colposcopy) if they can find me on their system, which presently they can't! Although they sent me the letter!

So big moan over, what I've done is;

Left messages with Rheumatologist secretary and clinic nurse specialist ( no call back from either a week and counting)

Made an appointment with my GP (earliest appointment was end of June! as she's part time and very popular doc) to discuss the way forward and possible beg for a referral to another hospital as I've lost confidence in the local one. Several of the London ones have a more holistic approach.

Getting my fitness levels back up, it's been a real struggle! But have managed Aqua Zumba 2 weeks running plus General swimming and walking 3 times plus a week.

Arranged a phased return to work with occi health doc. Over 6 week period, but he only agreed if I promise to a review from him in August.......start back at work 10 th June, I think, but manager is unavailable each time I phone.

I do feel better after getting all that out :)

Anyone got any self help ideas for me?

2

I think you have some great ideas for moving foreword. I hear you on the independence thing. I feel for you. I have been there too often myself. I will keep you in my thoughts and prayers. <3 a mousey head for you!

3

Thanks Michael, mouseheads to you too xx <3<3

4

Hi Louise, I feel your frustration! The system and NICE guidelines here just seem to work against us all the time. A friend of mine was able to access biologics via her dermatologist because her psoriasis flared up badly .... of course now she's on Humira her joints and fatigue are responding nicely. Is this worth a conversation with your derm?

Otherwise in your situation I'd probably also be looking for a second opinion. Have you thought about going to Leeds or Bath to see one of the PsA specialists? Even if you had to pay for a private consultation you'd have the benefit of an expert second opinion. Sounds like you've got a good GP so I'm sure she'll help as best she can.

You certainly should not be left suffering like this. Sending hugs across (the not many) miles.

5

Thanks Jules, yep the derm route has crossed my mind and that is one of the things I intend to ask my GP about, I haven’t been seen by my derm since early 2010 !! When I had UVB treatment which cleared me totally of P… Never had a follow up and I’ve got the feeling they will want to try that again as it was successful but I will definitely find out.
I wish I had the funds to go private but I can’t afford that at the moment and will see what the GP suggests first. Then see where to go from there x

6

Oh, my, what a lot you're going through, Louise!!! It sounds like you have a wonderful plan and are being proactive in getting what you need. Definitely get clarification from the rheumy as to what exactly the MRI findings indicate for your future medical care and what the "secondary fibro" thing is about.

7

Have you ever considered Fumaderm? I am not sure if it’s available for you, but it’s an option if the biologics don’t turn out.

8

Thanks for your suggestions, fumaderm isn’t licenced in the uk for P or PsA as far as I know although its been around for sometime and can be used for the treatment of P although the guidance prefers other systemic treatments that are fully licenced for use.
I’m not sure about fibromyalgia either, although a nurse I used to work with has been saying for ages she thinks I have it ( she does too)
Part of me just wants to throw a massive hissy fit and tell the medical profession to stuff it “where the sun don’t shine”!!
Feel I’ve struggled so long and hard to survive things in my life, largely by myself, that I shouldn’t be surprised with the lack of help…not a great way to feel I know but my normal sunny disposition has “done one” as my kids would say. Better shut up now before I say anything else lol

9

Louise, darling, this is awful for you. And I do think that you are keeping a clear head about what is best to do. I’d also second Jules’ suggestion about getting an expert second opinion from Bath or Leeds (or even, perhaps from Dr. Kaul in London). A second opinion made all the difference to me. And get the derm in on the action too. You are strong, and you have us cheering you on.

Mousie heads coming your way! <3 <3 <3

10

Louise, I'm so sorry you're having to deal with all this. Like Jules, I too would recommend getting a NHS referral to the Bath rheumatology hospital. They have a PsA specialist and dedicated clinic. Keep your chin up girl and take good care of yourself.

11

Thanks for all your kind wishes and suggestion, I will let you know how I get on x

12

I have no suggestions but I do hear you and send my thoughts your way. Hopefully you will get a break soon.

13

Oh Louise,

I am so sorry.

You know the diet no sugar, no flour add nuts, fish. Warm baths. Massage.

The process sounds awful for a disease that has a lot of invisible symptoms.

Meanwhile I will be thinking of you.

14

Hi, quick update;

After pestering the Rheumatology nurse help line for the last week (a message service which tells you they will return your call within 24 - 48 hours? err?! and asks you not to repeat call! Guess who left messages each day? ;) nice polite cheery ones lol ) I got a call back yesterday, Where the nurse told me the Rheumatologist would like me to keep the biologic counselling clinic appointment as he would like to get the radiologist consultant to review my MRI in their case meetings. So I'm thinking this could be him hedging his bets, and being thorough, or he doesn't agree with the report. Either way I'm still 6 weeks away from finding out the verdict........but at least I feel a bit more in the loop.

Having a nice mid week break away in the Cardiff area before I start back at work next week, and a branch of the gym I belong to is just around the corner so we're off for a swim :)

Thanks for all you kind wishes and thoughts, it means a lot to me x

15

You know our thoughts and best wishes are with you!