I've joined this community to run my symptoms by you. For weeks now I've been having excruciating pain with back muscles spasming. The spasms go from hip girdle all the way up to mid back range. It's like a boa constrictor is wrapped around me and as the days go by, they get even tighter (like this morning). I cannot straighten up first thing because the muscles are too tight. I cannot eat much at this time because the muscles are pulling tight across my stomach and eating makes me feel really ill. When I take a deep breath, the muscles pull from ribs/stomach all the way down to my lower back.
There is nothing which touches this pain. Flexeril only makes me dopey and takes the edge off a tiny bit. Ibuprofen/tylenol cocktail is only working a bit now where it used help immensely. My anxiety med is the only thing that relaxes me enough to be able to function a bit.
I am now using a walker in my apartment and a rollator outside, but the rollator puts me at an angle where I have to lean forward which is killing my low back.
I'm at 30 mg. of Prednisone which helps the PMR of course, but does not touch these muscle spasms, nor the pain in my hips, back, stomach. I know 30 is high, but I'm tapering. Had a GCA scare in January and was put on 60 mg. of Pred immediately only to find out it's not GCA (or so they say). So I've been slowly tapering the Pred.
I see my dud of a Rheumatologist June 26th. Last time she recommended Tylenol because 1000 mg. is a safe dose. Quote. If Tylenol only worked!
May I have your thoughts on the boa constrictor spasms? The muscle mid-back is so spasmed you can see it swollen above the spine. Thanks so much.
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Missus835
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Sorry you are experiencing this pain, sounds like the worst ms hug imaginable. Could you request a referral to pain management as your neuro seems unable to get it under control?
While there is an MS caused problem called "MS hug", without you also having other symptoms that relate to MS it really doesn't really sound much like MS at all. I can see that you have posted just a few days ago in another group that you were seeing a neurologist - and I would say that if MS was suspected that doctor would have considered it and ordered appropriate tests to investigate further whether MS is your problem.
If you are not happy with your rheumatologist then maybe it's time to get a second opinion from another specialist.
(Suggestion - re "PMR" - if you are going to use acronyms in a group which is not about the condition that the acronym stands for then it's a good idea actually write out in full what the acronym stands for - I had to look it up and I'm normally pretty reasonable on knowing what many medical abbreviations and acronyms stand for. What happens is that you can end up with people either ignoring your post or only asking you what you were talking about.)
I agree however I reach out to Neuro because it's impossible to reach Rheumatologist. He suggested I come into ER and request them to contact the Rheumatologist. That's where I am at this time. Thank you for the response.
First, can you adjust the height of your rollator, so that you are not forced into an uncomfortable angle? The handles should be "wrist" high. I am sorry you are having so much pain. You can pretty much rule out MS with a lumbar puncture, I believe, if your insurance will approve it. I am unfamiliar with PMR.
Best wishes figuring out your problem. I see you are 73. It's unusual to be diagnosed at our age, but not unheard of. I was 60 upon my diagnosis. Prayers for you!
I have secondary progressive MS. I get excruciating muscle spasms and even “ MS Hug”, the tightness around the girdle area and feel i can’t eat. Muscle spasms that are hard and look swollen. I take baclofen. Only Flexiril on few occasions when I can’t get sleep. Tylenol does not address the pain or spasms in MS. The symptoms in your arthritis condition (PMR), muscle spasms, stiffness, pain, can overlap as MS symptoms too. I inflammatory condition in muscles sometimes like when I had piriformis syndrome where a muscle spasm in next to pelvis bother sciatica nerve and caused numbness and pain down both legs and feet. The muscle spasm was the root cause
So I did see pain management specialist, a Rehabilative and physical medicine specialist, including physical therapy (PT) The specialist understands MS, RA and other problems. Ice helped with pain, which help me relax the muscles, sometimes warm shower. I was given a nerve block so I was able to do PT to help with the spasms and stiffness, some simple yoga muscles. The MS hug, relaxation exercises and meditation (even listen to music you like with relaxation poses, like a simple yoga pose .
Ibuprofen works but I cannot no longer take it much due bleeding disorder and gastrointestinal issues. Voltaren gel you rub on (like bengay) works great on the spasms especially those hard stiff muscles which are painful. So does Aspercreme. I have had small dose of Botox in various spots (25-50 mg). But can’t do for long period of time because muscles may get weak. A nerve block with piriformis muscle to relieve pain and do stretches/pelvic floor and back exercises. Actual a pelvic floor PT specialist (therapist). You basically get relief from pain so you can work on ways to do PT or stretching. Massage therapist was wonderful. I had one come to my home 1-2 times a month or I went to a therapist (no more than 1 hour session). This even help with MS hug. You need stretching/exercise.
The RA (rheumatoid arthritis) specialist was not helpful for me. But if your RA thinks it is PMR (Polymyalgia rheumatica) which symptoms overlap with some MS symptoms. Your RA would be the expert for GCA (Giant cell arteritis). But you need a neurologist, RA, physical medicine specialist to help you along with physical therapist. Regarding Tylenol, 1000 mg can cause liver damage especially taken for long periods of time. I have taken pain medication that includes Tylenol or acetaminophen, my physicians give me the version without acetaminophen, eg Ultram has acetaminophen so they have given Tramadol. Narcotics give relief from pain but you don’t want to take them for a long time.
Breathing exercises helps MS Hug and muscle spasms; a form of relaxation exercise. Even water exercises in a PT facility where the water temperature can be controlled. I enjoyed this form of exercise. But a short sessions initially. May overdo it in water. You feel no pain. But when you come out, you’ll know whether you received the proper exercise until you work up.
Movement of any type and breathe. Drink plenty of water. And eat healthy.
So I still have chronic stiff, hard muscles, MS Hug (around the middle and one time around the face). Prednisone does weaken muscles (atrophy) over time. They have to determine the benefit vs negative side effects. But need to move, stretch, meditate thoughout the day and find some activity like weaving on a loom, crochet, listening to a book to relax and enjoyment. A distraction from pain.
Hi TonyiaR7. Thanks so much for all the info. I'm on a waitlist here in Nova Scotia for a pain clinic and also physio. I do not have a GP. I do have my former Neurologist who referred me to a Rheumatologist. He diagnosed the PMR. I joined this community for information on MS, as I had googled the boa constrictor spasms and it came up with MSHug among other things. I get what I call a "tight head". I've lost most of the hearing in my right ear. It's like your head is going to explode and there's fluid moving around all the time. It's not an ear infection. This has been going on for at least 6 months and longer.
When I go to see the Rheumy on June 26, I want to be armed with information as she glosses over many things. This is getting worse daily. I will try some of your suggestions. It's not that I want to take the Tylenol, it's all she suggested. Thank you so much for taking the time to reply and you're not wrong it could be PMR overlapped with MS symptoms.
I am so sorry you're going through this. Community has given excellent suggestions, see a Neurologist, keep the great details of your health journey and any new symptoms if any more develop. Prayers and feel better. NeeC
I do have spacitìty issues but after reading your post I realize how minor my are. As a result I don't have any helpful insights for you but I wish you good luck in your search for assistance with your pain and help with your spacitity. Fancy59.
No not dx with MS, but what is described as MS hug sounds like the symptoms I am having at this time, which are new. PMR is Polymalgia Rheumatica. Autoimmune inflammatory disease which affects the shoulders and hips (and everywhere else). Extremely painful and is "controlled" with steriods (Prednisone). Kind of a cross between RA and Fibromyalgia, but not quite. I have an appointment with my Rheumatologist on Monday. Let's hope she's willing to explore, which usually she isn't. Last time she recommended 1000 mg tylenol, which does not touch this pain, which has escalated 10X since I saw her a month ago.
sounds like a longer than normal ms hug ...they make it hard to breathe or do anything ...sure hope they look into what is going on ....love and happiness that can get the pain to go away ....sorry ...i went to er one time for not knowing what it was and they didn't either ...
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