Having a 'Why me?' day :-(

Having a bit of a wobble so just want to let vent in the safety and anonymity of this forum! I was diagnosed a year ago with MCTD overlapping with SLE after having symptoms for a number of years that then all escalated and crashed together in the year before I was finally diagnosed with MCTD.

Reading about other people's experiences I know I have been very fortunate to have supportive GP's and to be under the care of Professor Denton/Dr Ong at the Royal Free in London as well as seeing my local rheumatology and dermatology consultants. I have a lot to be thankful for and have had every test and treatment going to investigate and alleviate my symptoms including an Iloprost infusion, prescribed Mycophenolate, Prednisolone, Hydroxychloroquine, Fluoxetine, Lorsatan, Lanzaprozole, Vit D3, had CT scans, MRI of brain and cervical spine, bone density scan, Doppler ultrasound of upper limb arteries, ECGs, echocardiogram, endoscopy, colonoscopy, nail fold capillary tests, lung function tests and endless blood tests - you name it, I seem to have had it in the past year - so in my case the care I've received within the NHS has been very good.

But today I've just found out the excruciating pain I've been having for the past 5 months at the bottom of my spine and down my right leg is because I have a slipped disc so I have to have another MRI to confirm this and then take it from there but the consultant has already said that given my MCTD and drug regime he would want to avoid any operation for me at this stage as it would mean having to stop taking certain drugs.

It is so frustrating and depressing to have somethng else go wrong with my body and cause so much pain just when I was feeling that everything else was finally getting under control. I just feel sometimes that not only my body is falling apart but my life as I knew it has fallen apart. Everything has changed and it's hard to accept that although, yes, life goes on and compared to so many I am still so fortunate, this life I'm now living is so different from what I knew before in what I can manage day to day and how my previous, very outdoors active life is now so limited.

Feeling sorry for myself which is never good but good to get it all out and over with!

10 Replies

  • I have never actually had a slipped disc but have had a history of back problems. Over time it seems either highly coincidental or maybe there is a link to when my lupus has been problematic.

    It may be worth at least bearing this in mind in case the same is occurring in your case

  • Tc.....not the end of the world....I have had a herniated disc in my L5 (lower back) for over 10 years. It has only gone out on me 2x in that time period. I am use to the numbing pain down the right leg to the point that I don't even notice it anymore. When it is aggravated, I go for a massage and get the muscles loosened around and I am good to go for another week. I am fortunate in that I do not take meds. for it. I am a very outdoors, active person and get upset about being limited, but I find another way. I will walk, or bike ride now to get out. I limit the amount of yard work I do, which I enjoy because I am outside. I go kayaking. You can sit and really still enjoy the outdoors. I think of the boston marathoners that lost limbs and are out on prosethetic legs still moving. That s the secret.....keep moving. Even if you feel a little sore after...can always take a nice warm epson salt bath. My lupus is low end so I am fortunate again in not taking meds. I do enzymes, vit d, and cranberry and turmeric pills. I thank God everyday for the health that I do have. I am not in permanent bed rest or in a wheel chair so I feel fortunate. I don't want to discount your unhappiness with all that u r going thru. You are entitled to be angry about it. I get that way from time to time. I vent, get past it, and try to move on. Hardest part is my energy levels. So tired sometimes I can't do a lot, but I try to do a little every day. And I let myself have down days when I am sad. It's ok... Hope u feel better soon....surgery is not always the answer...

  • Hi Cogb

    Sometimes Lupus and MCTD are the pits and your having that moment because of your back presenting you with a new problem to deal with and it's tough. Depending on your MRI result you might get benefit from going to a PainClinic. They have lots of different ways of helping and not as drastic as an op!. I go regularly for injections in my back which are very helpful. Hang in there and good luck for your MRI.X

  • TC, hope your feeling a bit better today. I am in the US, Washington State. Today I am grateful to sit here looking out my living room window watching sun warm the pasture and drying last night rain. I have geese, ducks, and just got some baby chicks. These animals bring me constant joy, sometimes simply watching them will get me out of my head. Not all morning are as good. But I have today, right now, and its good.

    I have had back surgery... it was not good for me. But that was a long time ago, thank God that's over with!

  • Hi tc

    I have hurt my back in the past. Initially through lifting when I was 19. I had as they term it a slipped disc. I can't remember which one but it was thoracic and the prolapse does cause pressure on my sciatic nerve. I have caused further problems once or twice, including a skiing accident. Initially I was your typical cant move scenario but it improved quite quickly. As Natura says try to keep some movement going. They no longer advise to rest long, as far as I'm aware. Pain management and physio if possible. Personally I don't feel i have a major problem with my back now as I have worked out when to stop activities. I have skied, swam and cycled until I got this SLE. 4-5 year ago I was the main labourer on our house extension, removing walls and everything. See how it goes you may find things improve quite a bit. It is frustrating and it brings out lots of emotions. I often feel that it's good to get them out. Het up feelings can make your back tense, not what you need right now x

  • Hope you are feeling less put upon today - I am having a tough time right now too, so feel your pain!

    Just wanted to join in with praises for our wonderful NHS :-)

    Also, to reassure you. my son had an accident at school last year. He was training for athletics in the school hall with their coach (ex - Jamaican athletics coach) and did the long jump but actually over-shot the crash mat, landing on the small of his back on the wooden floor!

    He fractured a vertebrae in two places, and slipped a disc. We also learned that he had a spinabiffida too.

    This was absolutely crushing news for my son, who was in absolute agony for a long time and (worse perhaps), not allowed to move, let alone do sports for months.

    Because he was only 12 they were (rightly) keen to avoid surgery for his injuries, but he will remain on physio for a number of years. The physio is working his core one year on, and he has built up muscles to help encourage the disc back into place. And the best bit? He is even faster at running!

    Can you ask for some physio for your disc? It doesn't have to mean surgery.

  • OMG - what an awful experience for your son (and you!) It's very good to hear he has done so well with his recovery. I very much hope to just have physio and perhaps a nerve block injection and avoid any op - I will definitely go down that route in the first instance all being well.

  • Appreciate all your thoughts - I don't often allow myself to wallow but now and again it just helps to let it all out online rather than in 'real life' ;-) I think those of us coping with chronic long term conditions and illnesses do go through a period of grieving almost for the lives we once led and it takes a period of adjustment before we can fully move on and live best the life we now have and I guess only being in the first year of diagnosis I am still going through that process and getting used to things the way they are now rather than the way they were. 2dogs - good to hear about the joy you get from your animals - me too! I have two dogs (!) - they keep me sane and I HAVE to walk them rain or shine twice a day so that keeps me moving and gets me out and about even when I just want to shut myself away :-)

  • tcogb - it is good to have a place to come for an anonymous wallow from time to time isn't it? I have had periods of severe back pain and know how awful it is. I think it's because our spines are the centre of everything we do and to be in pain there feels impossible. But things will improve I'm sure and gentle exercise with your two dogs as the weather improves is always a tonic. My two dogs are so nuts but the older one is starting to get arthritis so we hobble along together while the youngster sprints about trying to catch leaves and hares - thankfully never succeeding with the latter!

  • Feeling extremely relieved - saw my orthopaedic consultant today who had the results of the MRI of my lumbar spine and I do NOT have any prolapsed discs! I have some degenerative changes which are probably pretty normal for someone of my age but there are no signs of any nerve compression or damaged discs. So that's good but it doesn't then explain the pain I have been having and still have. He was very perplexed and could only suggest he refers me for some physio which I'm willing to give a go to see if it helps. Weird though as apparently my symptoms were classic sciatica pointers and he was sure after examining me it was down to a prolapsed disc. I am seeing my rheumatology consultant end of this month at The Royal Free so I'll discuss it all with them as it could of course be something connected to my MCTD/overlap SLE. Whatever it is and whatever is causing it, I just want to be able to ease the pain so I hope the physio can come up with some treatment and exercises that may help or the Royal Free can suggest something. And enjoyed reading your reply above twitchytoes - I love dogs and love reading about anything dog :-D

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