April 15, 2021 at 7:50 am #193884Help with symptoms
Hello. I am currently being investigated for muscle disease, which I understand can take years to get to a diagnosis. In the meantime, I feel that I am getting no help and advice with the actual symptoms. I have had pains in my calf muscles since the age of 15, I am now 45. The problem has progressed at an alarming rate over the last 12 months and I am now struggling to walk. I live on my own and my one joy in life is to go out on walks with my dog. I can’t even take him round the block at the moment without ending up limping and being in substantial pain. I am also now struggling to put my shoes and socks on. I am kept awake at night by pain in my thighs too.
When the investigations began I was hopeful that something could be done to give me my mobility (and life) back. Now I am starting to give up hope and am faced with things getting worse, not better. What do other people do to manage the symptoms? What pain relief actually helps and might allow me to walk further? I’m really quite scared at the moment and feel that, if I can’t improve my situation, I’m not sure I want to carry on living. I know that sounds really dramatic, but I can’t see a way forward. Can anyone offer some advice that might give me some hope please?DitaParticipantPosts: 0Joined: 20/03/2021April 15, 2021 at 12:33 pm #193930Reply To: Help with symptoms
Hello and welcome Dita, although I am sorry it is in such circumstances. There is clearly a lot going on here for you and it is something that can be helped I am sure. Diagnosis for any muscular disease will take time. To quicken the process could end up making the diagnosis wrong and thus treatment ineffective. You have not said if you have been taken on by a neurologist. They would clearly be the most suitable to help with diagnosis. I wonder also if you have been referred to a pain clinic. When you ask about suitable pain relief, they wold be the people to tell you as it can often be a matter of tailoring available medications to your needs, and adapting them as things change. I guess you have tried the usual off the shel meds with little effect. If not, then they must be worth trying, something like paracetamol for example. But I would also suggest heat as being a great pain reliever. Like you I have had leg, and rest of body, pain for years, and thanks to a pain clinic, and physiotherapy, I can manage it now. However, when things get bad, I turn to a bath, or a heat pad. It really makes a huge difference for me.
Please do come back and give us some more info as to what is going on with you and whom you are seeing, and perhaps we can give you some more help.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015April 15, 2021 at 4:58 pm #193934Reply To: Help with symptoms
HI Dita and welcome to Forum
As Mike says the road to diagnosis can take a while. Has GP tested your creatine kinase (a protein usually found in muscle fibres). This done via a blood test. Its basic indication of muscle damage. A muscle biopsy will in most case give definitive answer of which MD you may have.
In meantime GP should be helping coordinate the management of your mobility symptoms. Regardless of what condition you have awaiting confirmation your mobility and pain needs addressed.
Professionals you may find helpful to be referred too:-
Occupational Therapist to assess if there is any improvements or aids that will assist dressing and getting about safely in your own home. ie stairlifts. dressing sticks etc, hand rails,
Podiatry/Orthotics This department can look are your standing and walking gate to see if any form of lower leg support, supportive insoles might help you walk with less pain. Often as our tendons in out legs shorten making foot turn in and our method of walking becomes harder and can in turn effects hips and knees.
Physiotherapy They could also look at your sitting, walking and sit to stand to see if they can create a stretching program to improve the muscle movement and control.
Getting out with your dogs is really important. When I was first starting to feel the increasing struggle of walking. I bought a little electric scooter in order to take my nephew to nursery. Its a hard step but for me personally it saved a lot of energy, was safer and expanded my mobility. Not to mention nephews puppy enjoyed the ride on the footboard
"""""""What doesn't kill you makes you stronger""""""CatModeratorPosts: 1,002Joined: 20/09/2010April 16, 2021 at 7:19 am #193942Reply To: Help with symptoms
Hi Mike and Cat, thank you for your messages.
I have had nerve conduction studies and an MRI, which resulted in a referral to a neurologist, Mr Mark Roberts. I have had a telephone consultation with him. Initially, he was going to refer me to have a muscle biopsy and the creatine kinase blood test. However, after receiving some advice elsewhere, I asked if a genetic bloodtest was a possibility and he has agreed. I am just waiting for the appointment.
As you said, Mike, I am finding that heat helps to soothe the pain. I don’t know where I’d be without my electric blanket! I phoned my GP to ask about pain relief, but they just told me to use ibuprofen or paracetemol. I don’t like the idea of using them all day every day.
I have been looking at mobility scooters, but i’m not sure when to take the leap. Nobody would know that I am having problems as I don’t have any difficulty walking up and down the office at work. It’s continual walking for more than a few minutes that bothers me. I’m also a little reluctant as I don’t want to splash out and then find my problems are actually something simple that can be fixed.
There’s so much uncertaintly isn’t there? Gosh, to think how many people are going through this. Everything has to be put on hold, even down to redecorating my bathroom, as I don’t know whether I need to plan for wheelchair access in the future. My heart goes to out with anyone else dealing with this. xxDitaParticipantPosts: 0Joined: 20/03/2021April 17, 2021 at 12:56 pm #193951Reply To: Help with symptoms
Please do not accept no for an answer. If paracetamol is not working go back and tell your GP. They have a duty of care to make sure they do the best they can to help relieve pain. It may be a matter of cost, in which case seeing a partner will ensure you see the person holding the purse strings.
As fr a scooter, I started out by hiring one for the day. What a difference it made. I was not longer exhausted whenever I went out. I had learned a long time ago that my body is like a battery. The more I sued it the less energy I had, and of course the longer it took to recharge. Thus using a scooter left me energy to try other things. If you are bothered about using one, may I ask if you use a car, bus, train, bike/ All are forms of transport just like a scooter, so why worry.
Your consultant is clearly doing the correct things for you, and like us all at the moment, these things cannot be hurried along. Whilst you wait hire a scooter and see what you think.
None of us know what is to come in the future, so please try and be patient a little longer, I am sure it will be worth the wait.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015April 24, 2021 at 11:17 pm #194236Reply To: Help with symptoms
Hi Dita, it sounds as though you’ve already been given some great advice. I run a Facebook support group for those affected by all types of Muscular Dystrophy, if you’d like to join you’d be more than welcome xKatRParticipantPosts: 0Joined: 04/07/2019
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