Hi to everybody! I would say I’m back but I’ve never been away, just had an an awful lot to deal with lately, and still don’t know if I’m able to put it into words lol.
in the last year, I’ve been getting worse, but I’ve also been getting a lot of new crazy symptoms, so there were lot of changes in the house first, so it started with the OT arranging a stair lift, then a special chair for the living room, and a wet room. Which we have been delighted with, but the GP has been really lost as to what to do, so sent me back to my neurologist.
So neuro repeats the usual MRI’s, says there’s some changes but doesn’t think there’s enough changes to warrant how poorly I’ve gotten. He thinks there could be something else at play, we already knew I have arthritis in my right knee and hip. So got sent to rheumatologist this time, so he said I’ve got fibromyalgia ontop of my PPMS and arthritis, so my heads been up my bum, so to speak.
I spend months just blaming my MS and thinking wow I’m going down hill fast, but apparently dealing with one thing isn’t enough, my body wants to be greedy.
So I’ve been hiding out a bit, trying to put my head together, and know what pains what, and now the cold is hitting, everything is so sore. How is it affecting everyone else?
Im a new poster here but had to jump in to reply to your thread.
Sorry to hear that you have gone downhill so fast, and the cold weather coming does not help - you are really dealing with a lot.
I am the other way around to you: started with cervical spine injury, degenerative disc disease, Fibromyalgia and now it seems on top of that I am dealing with a very fast progressing PPMS (as if I didn’t already have enough!)
so in the last 2 months I have been in and out of hospital, from one neuro to the next, and now because they don’t know what else to do with me, they are sending me to a residential neuro unit for a month for ‘rehabilitation’. The disability and spasticity happened very fast for me and I am just learning how to navigate a wheel chair and cope with life from a whole new perspective. I feel like Ive got a double whammy: daily burning pain in my neck and shoulders (which Ive had for years now) and now the wonderful new world of MS and all the myriad of crazy nerve sensations, numb legs, blurred vision, bladder problems etc. Never a dull moment! Just before I got sick my partner and I were in the process of emigrating to NZ (actually I am returning to my old country) but we have so many complicated and expensive logistics to deal with, right at the time I have had to stop work and apply for disability. Some days I think the stress, pain and anxiety will kill me, but I wake up the next day knowing that I have to go on and there should be hope ahead if we can get through this visa and emigration process, I am missing my family very much and the health insurance is very expensive here in Europe.
What kind of pain killers do you find most helpful? I used to always use Nurofen Plus or Codeine but its not available here in Germany so I just take extra strength Paracetamol and today my pain specialist talked about trialling Baclofen for the spasticity
When I was much younger. I was always bemused by my grandparents then parents commenting how the cold used to strike them to the bones. Fast forward a couple of decades to a freezing late November when I was being shunted around the middle of Cambridge in a wheelchair; in an instant I knew exactly what they meant. Now when the temperature falls below 16C It goes straight to my leg bones. Fortunately, I have escaped any arthritic pain up to now but the dual thermal system which has developed between my top and bottom half is driving me mad. It could be summer outside but I’ll still have a blanket over my knees. (No, it’s not tartan.)
To have other things on top of the MS seems too unfair to be real. No wonder you have found things hard. I hope you are able to find comfort in the things you can do.
You are dealing with an awful lot at the moment, don’t be too hard on yourself, be kind and try to great yourself with something you like (chocolate might be a good starting point)
Also try to rest as much as you can, don’t overdo things, any jobs (even little ones) will still be there when things pick up.
Take care, and I hope things improve for you asap.
With my own personal experiences & with a very similar situation to yourself. I had a bad reaction to Baclofen.
Baclofen seemed to render me to become in a cabbage state. Not good with all the other problems. Getting back into doing positive stuff. A total diet change, exercise, fresh air & Vitamin D3 has had better results for me.
Surrounding yourself with good people helps too & most importantly, listening to what you think. It’s your life. Your health. No one knows better. Menthol supplements have helped me & hazel nuts. Testing with alternative options. Thinking outside the box.
Yes, some drugs can cause more problems than solve them, that is what the doctor said yesterday too. I once tried Gabapentin but it made me feel so weird!
Probably the stress is overwhelming for me right now since we are in limbo between two countries and two lifestyles and so much is still unknown. Maybe once I get ‘home’ with family again and living near the sea, I might feel better. In the meantime we have to pack up and sell all our belongings in the next 4 weeks and we still don’t have a place to live for December yet
Interesting your comments about the Vitamin D3, have been told Im lacking in D vitamins, so must look into that, also i eat a lot of nuts and hazelnuts, almonds etc. I trained as a Natural Therapist years ago, so always been very aware of dietary factors and made the extra effort. Before the MS I had Fibromyalgia and Disc Disease, so I tried many, many alternative therapies, unfortunately as most are not funded by health insurance or the state, it wiped me out financially. I am also a trained Reiki practitioner but due to the nerve damage and limb weakness its too painful to give treatments these days.
Exercise is the harder bit as even taking a few steps is very painful, I try to keep the wheelchair only for ‘bad days’ and try to walk a little each day with my Rollator, but its like walking on live electric wires
I take a tablet called Cymbalta/Duloxetine for neuropathic pain…it’s brilliant, I used to take gabapentin but this is so much better, what surprised me is that my dad who lives in Florida takes exactly the same tablet for fibromyalgia.
Maybe worth you asking your GP or neuro…two birds with one stone so to speak!
Take care of yourself, hope things improve a little soon,
