I've been experiencing back pain from 1998. Experience numbness, spasms, lack of co-ordination, so everywhere hurts including under my toe and finger nails. I've had to fight to get tests done because I was always told you have arthritis, it's wear n tear. Talk about frustration. I knew it wasn't that so at times I'd just try n bear the pain while trying different pain relief. It was was while attending physio and the therapist wasn't happy with what the specialist said so she wrote to him demanding another MRI because she thought I was too sensitive when being touched so I had another MRI first time I see the pain specialist he explains why I'm so sensitive, shows me what my spine looked like and asked if I had been in a car accident because my disc on on top of the coccyx had crumbled and he pressed there to show me and my legs collapsed n the pain oh my goodness.
I have so many problems because of this. I suffer with anxiety panic disorder and I've had a cancer tumour removed. I've just turned 50 and I thought because I've always been fit, I used to do volunteer work, I worked with children who found it hard to channel their anger, Down syndrome, speech impediments and I used to do African n Caribbean dance traveling around from schools, universities including Glastonbury ( amazing) all these while being a single parent of two beautiful caring children.
Now I watch because there's times I can't move, I hate nighttimes because the pains at it's worse. No matter if u rest walk around slower than a slug. I don't know what it's like without pain anymore. I have friends n family who say they understand but they just frustrate me more with their comments. I wish I could take this pain and let them have a taster of say an hour or even a day for them to really understand and shout up
Sometimes It's so unbearable I cry n cry more cuz I can't even thump my bed cuz it hurts too much (carpel tunnel)
I now try taking a day as it comes can't really plan I have to rely on others n that's another story lol. I just wanna have fun as I can't do very much. But I'm still breathing better than some, I can still talk, hear, n even though there's times I can't move or I have spasms half or all body I'm still able to see another morning and that's what I think of when I'm having a bad one
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Eils67k2
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Has your Doctor checked your Thyroid function ? I too get Carpel tunnel syndrome (under active thyroid). When I am too low on hormone, it reacts. I have problems with the spine although my injury went unseen and it mended itself. (Sort of, vertebrae fused itself) Pain is a daily thing, wintertime I am eager to get the small amount of pain relief from the epidural injections. But I cannot suggest anything other then to pressure your GP into getting some kind of surgery, perhaps a fusion on the spine. Your specialist is under great pressure during the present powers in charge, to save money. My treatments have been cut. So unless you scream and shout (nicely) you are getting by and they will not do anything. So write a letter to the GP, stating the outcome and that you are in severe pain and discomfort. Ask them to suggest to the Hospital or another one, your need for a solution.(letters are put into your notes) Its not nice being sidelined. inhumane I'd say. Push for your relief. Seems we need to pressure the people, who are only trying to provide care and in my book they shouldn't be accountants.
Can't imagine what you are going through. But you are so right about just taking one day at a time. Each day as it comes.
If you've had lots of tests you may probably have had Thyroid function tests at some point. Possibly only T4 and TSH though. Sadly, if these are just in range they would be reported as Euthyroid ie 'Normal '. With Hashimoto's Autoimmune Thyroiditis (which is responsible for causing Hypothyroidism is the majority of patients ) bloods can fluctuate. So ask your doctor to test your Thyroid Antibodies - TPO and Tg to eliminate Hashimoto's. You could also ask GP to check nutrients levels in particular :
Vitamin D
B12
Folate and
Ferritin
as you could be deficient in some of these. Look up the symptoms of deficiencies in each of these on NHS choices. Or have you already been prescribed Vitamin D with your conditions? Still worthwhile checking levels though.
As a cancer survivor do you receive any moral support (or practical) from any of the cancer organisations? Is there a Tenovus SingwithUs Choir near you that you could give a try?
sometimes just listening and offering support is well appreciated I have blood tests often and that's how they detected vitamin D deficiency so im now taking tablets for that. I get seen by my Gp once a month it was this doctor who referred me to pain clinic and I'm so glad she did because that's when things started to happen. The specialist at the pain clinic has done so much for me and his still battling on to find why I'm having spasms and he explains what the pain killers do because he doesn't believe in using something if it's not helpful and I've had intravenous pain relief instead of the epidural.
I'm still waiting for next lot of tests sometimes I just want a rest from the poke here n there.
I understand you wanting a rest from the poke here and there, so I don't suppose you need to hear this just at the moment !!! But, if you have a good relationship with this GP, do have a think about asking her for the Thyroid Antibodies blood tests even if you wait for when next tests due. I'm not saying you have Hashimoto's just that it would be good to eliminate it. I realise that you would not want to jeopardise the good relationship you have with this GP now you are getting somewhere after the pain clinic referal. So I suppose timing would be important. I suffered for many years before my diagnosis of Hashimoto's and Hypothyroidism. I had Hypothyroid Blood results in 2008 but didn't know because no one told me. (I'd been very unwell with severe immobility.) They were tested again in 2010 after a Rheumatologist noticed the old results on the computer. However as his tests came back reported Euthyroid because they were just in 'normal' range he said 'Thyroid's OK and diagnosed Fibromyalgia !!!!
I wasn't diagnosed until late 2011 and had to be pro-active to get to there.
The term 'wear and tear' for people with Arthritis really makes me angry. It's one of the terms I would like to ban!
You have been found to have Vitamin D deficiency. - Would I be right in assuming that your result was below 30 and you were initially given 'loading doses ' over the first weeks and are now on a maintenance dose?
I hear you ,if you have read my story you will know why i sympathize with you.Ive jyst got back from the pain clinic and im waiting to have my knee operated on again.My back surgery was so successful that i started making up for lost time playing with my grandson and in doing so ive torn the miniscus ,interior and anterior and completely torn my knee to bits.Its excruiciating agony.Just waiting to hear from the orthopedic surgeon.I suffered with my back for 24 yrs and it was a trainee Dr who ordered an mri and i was operated on within 5 months,the Drs always told me they wouldnt operate as i would end up in a wheelchair.I was so lucky this neurosurgeon made the decision to operate,he had no idea it woukd be this successful.I can never thank him enough for the new life i have.But i will never forget the 24yrs of hell i endured beforehand.I wish you all the best ,there is nothing worse .Best of luck.Manditts.
Sorry I I’ve taken a long time to reply to you all. I find it hard to write about myself. I’ve had a lot of down times so concentration is crap🙈 plus personal / family problems so things can get a bit overwhelming
I admire you Manditts your a fighter I hope all is well with you. And same to you to Mary.
Your all amazing on this app I have read some incredible stories when I’ve been able to read and not skim over. thank you so much for all your advice. I had thyroid tests that’s fine your so right about the vitamin D loaded up and now one a day
I will look into what you have written thanks again really appreciate your help and support I just cannot believe how many people suffer with chronic pain and that doctors are still saying it’s wear n tear 🤨 to fob u off and leave you suffering I haven’t given up just so frustrated 😏
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